Las Vegas, NVLupron has not received the same widespread media attention to which other medications have been subjected, but for some patients, Lupron side effects can be devastating. Some say the drug is dangerous; others call it a poison. A number of websites have sprung up to provide Lupron users with a forum in which to share their experiences and debate the drug's pros and cons. Even some medical experts have come out against Lupron, arguing that the risks outweigh the benefits.
Lupron is used for a variety of purposes. It is prescribed to children to treat early-onset puberty, to men who exhibit symptoms of prostate cancer in men, and to women with endometriosis, a condition in which the uterine lining grows outside the uterus. Lupron is also used widely off-label as a "down regulator" for women going through IVF treatment. Patients take Lupron in a single day dose in the form of daily shots. Lupron Depot is given in an extended release injection that lasts for 30 days.
At least one expert believes Lupron should be pulled from the market. Dr. John L. Gueriguian, former medical officer with the US Food and Drug Administration (FDA), stated in a report for a pharmaceutical liability lawsuit on 3/19/08 that Lupron should not be used.
"After years of use of [Lupron] in a great number of patients, the evidence is clear that TAP [Takeda Abbott Pharmaceuticals] didn't study [Lupron] adequately before marketing," Gueriguian states in his report. "After its introduction into the marketplace, TAP did not perform enough long-term studies to detect potential long-term and irreversible side effects of [Lupron], which has been shown, through independent observations and studies, to be able to cause irreversible side effects and permanent severely disabling health problems. Lupron temporarily stops menstruation, but does not eradicate endometriosis for long-term. Lupron should only be limited to six injections for the initial treatment, and a retreatment should not exceed six injections. Lupron cannot be given more than twelve injections per lifetime."
He goes on to say that endometriosis can grow back after Lupron treatment ends. What's more, Lupron was used to treat endometriosis in females under the age of 18, despite the fact that the drug had only been tested on women over the age of 18 with endometriosis.
Dr. Gueriguian alleges that that TAP intentionally suppressed knowledge about the risks associated with Lupron, including bone density loss (leading to permanent disability in some cases), generalized pain, headaches, fluid retention, depression and immune and nervous system problems, including spinal fracture, convulsions and paralysis.
Drugs whose risks outweigh their benefits should be pulled from the market, the report concludes.
Lupron, manufactured originally by TAP and now by Abbott, resulted from a joint venture between Takeda Pharmaceuticals and Abbott. The companies subsequently split in 2008, leaving Abbott with the rights to Lupron.
According to ABC News in Las Vegas (ktnv.com, 10/30/09), TAP pleaded guilty in 2001 to criminal charges that it violated the Federal Prescription Drug Marketing Act. The pharmaceutical company agreed to pay $875 million to settle claims that it paid kickbacks to doctors to promote Lupron. Dr. Andrew Friedman admitted that he falsified and fabricated 80 percent of the data in leuprolide acetate (Lupron) research reports.
The FDA has received more than 12,000 reports of adverse events linked to Lupron, including more than 1,100 deaths.
All the symptoms and permanent effects people are mentioning from this drug are because (at least for women) it is shutting down your ovaries. It is literally stopping the production of Estrogen. Estrogen is magic for women. When you take it away due to breast cancer or endometriosis you are going to get millions of "old age" symptoms like memory loss, bone density loss, menopause symptoms, weight gain, etc. If you're not healthy and exercising regularly and eating well - you're guaranteed problems but not from the Lupron - from the lack of hormones that were helping you with your life before. So get a Fitbit, take some Effexor and maybe some version of Phentermine and get your life back!
Posted by Amie
I took six shots and it was torcher to get through. Not been same since. The aches and pains get worse ever day,my thyroid is messed up now along with my gallbladder,teeth are breaking off and my vitiam D is really really low and is not getting better. I get worse everyday.
Posted by Miller M
I took 4 of 6 shots of Lupron 2.5 years ago for stage 4 endometriosis. It was found in my colon and removed along with 6" of my colon. My obgyn suggested the shot. I wish I had done all of this research before taking the shot. If it had been for the Lord and praying mother, I would not be here today. I developed anxiety, panic attacks, high bp, gi issues, joint and muscle pain, and major weigh gain. I am only 39 and feel like 90. I have recently been having teeth issues. I have had 5 pulled and need one more pulled. For some reason they are all cracking. My doctors will not help me. They say it is not from Lupron at all. I have numerous test done and everything comes back normal. There is no explanation of my pain except Lupron. I was a young, active women before this shot. After the third injection, I ended up in er thinking I was having a heart attack. It was a panic attack. I wish there was some kind of help out there for people that I have suffered from this drug.
Posted by Andrew
I'm afraid I cannot join in with some of the hysteria I've been reading here. Lupron is helping to save my life - can't ask for much more than that. Prostate cancer, PSA over 260; Gleason 9; age 71. Lupron knocked the PSA down to 2 so I could begin radiation - 44 treatments. Yes, I had hot flashes, which stopped completely when given daily Megace. Depression, gone when I started Effexor. Just a case of balancing the meds. I have many of the other side effects, and many are not pleasant, but live with them. Weight gain? Be more careful what you are eating, don't just sit back and whine. Fatigue? Exercise more. Frequent night urination? Keep a bottle by the bed.
I've had three 3-month and one 6-month injections so far, and I accept the discomfort that comes with the drug.
I guess what I am saying is to not just lay back and complain when you could be doing things for yourself. I told the doctors that I'll go along with anything that will keep me above ground a while longer. And when the Lupron is no longer effective, I'll just go to plans A, B, C and take other medications.
I suspect that some of the symptoms described above could be better treated by consultation with a psychiatrist than by complaining about Lupron. Without it, I doubt that I'd be sitting here writing this. Thanks for reading.
Posted by Roy Mullins
I want to say a big thanks to Everyone that have commented about this drug , Lupron. This drug has definitely destroyed me . I'm talking about loss of sexual desire, unable to perform sexually, weight gain, loss of enjoying the things in life that I used to enjoy, severe back pain. I wish that we as victims could get in touch with some one that would be able to help us all with this terrible god awful drug.
Reading all these statements I know in my heart that this drug LUPRON is so very bad it should never be taken by anyone.
Posted by gabe
last post, september. was due a lupron shot dec 3 with a psa of 0.06. my doctor retired. he was a in network doctor and my united health care insurance, could not find a network doctor to give me the shot. i am getting insurance now with no in network. i will need to wait and see what hapens now. with a new doctor on jan 13 2017
Posted by Cheryl
My daughter was given the shot Lupron after having tried almost everything for her endometriosis and not being able to conceive. Each month she took the injection we noticed some differences in her behavior. On the 5th shot of Lupron it really hit...she ended up in the ER with disconnected thoughts and racing thoughts, manic behaviors, no sleep, not eating. she is 31 and has never had any problems in the past. The drs there wouldn't agree that this shot was doing this to her. We all know it was the Lupron. She is slowly getting it out of her system and will never take it again. Lupron should never be given to anyone, it is poison and cause so many health issues to people. no one told her the affects that this drug would or could have on her. Please educate yourself on this drug before agreeing to have it injected in to you. This has runin my daughters life.
Posted by Thomas Barrett
I have been on Lupron for 1.5 years
night sweats hot flashes zero interest in sex fatigue loss of body hair and blurry vision
PSA dropped after radiation 45 treatments
hope to get off this soon
symptoms seem to get worse as I get more shots
Posted by Charlie Eskridge
I had prostate surgery in 1999 and radiation in 2001. I started Lupron in 2002, every 4 months. My PSA has stayed below 0.1 ever since. I just quit the shots since I had lost 100/125 yards on my tee shots. I have had no side effects, other than loss of distance. I am a FAN of Lupron.
I don't have any Testosterone but that was from the radiation
Posted by gabe
last post was may 17 2016. now with all 43 radiation treatments done and a psa test of 0.12 and 7 months of lupron. my doctor wants me to stay on lupron for 2 yrs. this is to help the cancer not come back if the radiation did not kill all the cancer. they seem to talk in circles (the medical field). now it a waiting game to see if it killed the cancer or not. the lupron has made my life very bad, with hot flashes, shallow breathing, very tired, dry cough, bone soreness, bottom feet burning, not wanting any food. i am on 6 month lupron shots and due again in december not sure if i can stand another one, but i guess if you are fighting cancer what else can you do just hope for the best and deal with the lupron........gabe
Posted by Reginald Sudds
I'm receiving lupron injections every 90 days. Since the first one (stomach injection) I have hot flashes, tingling in both my feet and fingers and interuptive sleep at night. Later after my 3rd injection, aches in my joints and back. I sometimes feel as though I've aged 20 years. I never knew anything about lupron nor all the negative response to it. On my next visit to my oncologist I'll be asking about an alternative chemo medicine.
Posted by Karon
My 25 yr old daughter: 22 days after the 2nd monthly Lupron shot: high bp 186/117, blurry vision, left eye drooping, dizzy, slurred speech.
Hospital for 4 days: 3 MRI's, EKG, Echocardiogram, blood work...all NORMAL. Discharged, diagnosis:possible vertigo
3 days later: same symptoms + neck pain & pounding headache and again stoke like blood pressure. Back to the hospital: blood pressure meds, Spinal Tap ....ALL NORMAL
no Lupus, MS, Lyme Disease, NOTHING
Only one difference in this healthy 25 year old >>LUPRON
None of these side effects were ever revealed and finally the doctor tells me this is rare only 1 in 1000 SERIOUSLY !! that is NOT RARE that is CHRONIC
The debilitating effects of this drug have been known to the medical field & they are still prescribing for personal financial gain
Posted by Mike
Lupron has saved my life for prostate cancer.
Posted by Espo
Yes like a lot of you I have bad side effects.Started treatment for for prostate cancer stage 4 Gleason 9 in 2013. 42 rounds of radiation, Lupron injections. Side effects now, Sharp Shooting pains in fingers and toes, top of feet and other areas, weight gain,Aches, muscle pain,aches in joints shoulder etc,etc, etc.Just got PSA results 0.21 were 13 when first started.So guess you have to take good with the bad .hang in there everyone (:
Posted by Margaret Chikamwase
I have used Lupron Depot Injection for 3 months when i was prescribed by Dr. I have experienced side effects for example hot flush, headache, tiredness but these were more in the first month when i received my third injection they were lessening i was my doctor told me to use it together with Dexorange. I finished the medication just waiting for my periods.
The backache pain, pelvic pain and constipation has reduce
Posted by Meera
I was diagnosed with breast cancer left side, in early March 2016. In April 2016, I was told it was Stage 4 metastatic, and told I need to start Lupron injection, once monthly. When I asked about the side effects, the oncologist told me that the side effects are the same as menopause and I am to expect typical menopause symptoms; hot flashes, night sweats, no period. I asked the nurse that administered it, and she gave me a printout from a web md type website.
During the first month, I experienced hot flashes and noticed that my skin on my legs started to get scaly, which has never happened here in CA. I still got my period during the first month. I received a second Lupron injection, not thinking twice, and right around the time that my period was supposed to come, I felt a hot prickly sensation run throughout my body, and then a rash started to develop all over my body. OMG, its horrible. I went to 2 Urgent cares, and was given antibiotics which are supposedly contra-indicated, and then steroid cream, then a visit to my oncologist, who didn't even want to look at it, and said I need to see a dermatologist, and suggested I go to ER so I can get fast tracked to one. Meanwhile my rash is not getting better......its not spreading anymore, thankfully.
I was set to get a third injection and refused it. My Oncologist then decided that she is not able to fill out paperwork for my job to accomodate different hours. Why? Because I was doing holistic and refusing chemo, and all of their drugs except Lupron, until now.
I have since seen a Holistic Chinese doctor, who will be following me and treating both the rash and cancer. I have been doing a holistic regime since March 2016, and then included a cannabis protocol mid May, and recently shifting holistic regime to a Eastern medicine, and my tumors are shrinking.
My Chinese doc looked at my rash and said that I have poison in my system. Lupron is poison, period.
Whatever happened to doctors honoring their oath 'to do no harm'?
There should be a class action suit against the makers of Lupron, and the Doctors who prescribe it.
I am going fully holistic.
Posted by Stephanie Merck
I so upset I am about 40 days off of Lupron after 5 monthly injections. I did so much research on weather or not it work to for my situation I never came across anything about long term side effects or permanent damage to my body. My hair has progressively been thinning so I decided to see if Lupron could be the cause and then did I come across all of these stories and about permanent bone loss as I sit here with pain in my fingers. I was all set to go and get my final injection but after reading all the horror stories clearly I'm going to pass. I assumed these symptoms were temporary and would go away but as I think about it, it's past the life cycle of the injection and I should be feeling better. I had a head of thick bouncy hair and caramel brown skin, now I look like an old woman with gray balding hair and dark circles around my eyes and pimples on my forehead. All of my joints hurt, I have developed TMJ, blurred vision and memory loss. Now I have read that this company had already plead guilty to criminal charges for falsifying data in order to get this drug on the market paying out a settlements totaling $875,000,000. I trust my ObG, nothing was working for me (not even a D&C). I was on my cycle for like 3+ months, having severe endometrial cramps and I know she just wanted to offer me some relief but I cannot fathom a doctor prescribing this with or without all of these facts. I am going to begin a detox right away, followed by the Paleo diet and pray my body can recover from this awful drug. oh and I gained 20lbs.
Posted by Maria
Received my first 11.25 mg (3-month) injection almost three weeks ago. First two weeks were horrific. I have uterine fibroids, one very large sitting low in my enlarged uterus causing urine retention at times. I was advised that Lupron would help shrink my uterus and fibroids and thus aid in having a minimally invasive surgery to remove my uterus, tubes and cervix. I understand that it takes two weeks before Lupron takes effect and that during these two weeks your symptoms "flare up." That was me. I typically have lots of energy, but have been fatigued since day one - this is the worst; I find that I have no tolerance whatsoever; I have edema in my legs and in my abdomen; I have constant bleeding and sometimes heavily bleeding at times; I have cramps and sometimes labor pains; I am always hungry -- I understand that Lupron increases one's blood sugar level and this probably why I am hungry all the time; I have headaches - typically starting each morning when I arrive to the office via an ocular migraine. I looked drained. I am drained. I have no energy to do anything. I can see why one could develop depression from this drug. I have been told to exercise, but after a day of work and going home, taking care of family and pets I am too tired to exercise. I am 5'7" and now weigh 155 pounds - up some 23 pounds! I was very active, working out some 3-5 days per week, and was in great shape! This is not good! The worst is the doctor has now started me on progestin -- add-back therapy. Now I can add shortness of breath to the list of side effects. Not good! Doctor wants me to take another Lupron injection at three months! Heck no! All to avoid an abdominal surgery! I think I should have gone for the abdominal surgery! Not happy! Miserable in California
Posted by Bridget
LIFETIME SIDE EEFECTS & HOW I COPE:
I was given Lupron for endometriosis for 6 months in 2001. My doctor told me it would only cause bone loss if taken for more than 6 months. He said I'd have TEMPORARY symptoms of menopause while taking it. He said Lupron had been shown to shrink/kill endometriosis, or at least get rid of the pain, sometimes permanently, and sometimes for several years before the disease returned. He said taking Lupron might keep me from having to have a hysterectomy. So I opted to try Lupron before resorting to surgery.
Of course I had all the symptoms of menopause while taking it. That was to be expected. As soon as the treatment was over, however, my endometriosis was worse than ever, and I was bleeding 6 weeks on, 1 week off. I had to have a hysterectomy anyway. Lupron was nothing more than a temporary band-aid with terrible, long-term health consequences.
It's been 15 years since I've taken it, and the side effects are not going away. New symptoms occur over time, and old symptoms get worse over time. I had no idea this drug was the cause of my mysterious health issues until I saw this website today.
*Weight Gain: I'm 4'11". I always weighed between 90-100 pounds before taking Lupron (even after having kids). I gained 60 pounds within a year after taking Lupron. I can't lose the weight unless I literally starve myself...which I'm assuming is why some people become anorexic. If I eat more than a half sandwich and a handful of veggies in a day, I gain weight. I started taking Phentermine last month to try to lose some weight. We'll see if it works.
*Memory Loss: I noticed this immediately after my first shot. I used to be known for my excellent memory and my sharp wit. Now I feel foggy-headed, I have a hard time retrieving words from memory while speaking simple sentences, I can't remember specific details, I get confused while trying to remember something, I can't remember names, important details. Phentermine helps with this.
*Fatigue: I used to be a ball of energy with a bubbly personality. Now I'm exhausted no matter how much sleep I get. I have a hard time getting out of bed. I want to take a nap 2 hours after getting up. Sometimes I have to take a nap before driving home from work. I take sublingual vitamin B-12, and vitamin B complex.
*Chronic Diarrhea: I never had this problem before. For the last 15 years, every morning I spend 2 hours in the bathroom before I can go to work. (Metamucil helps).
*Bone Loss: Excruciating pain in my lower back, sometimes my hips, and on really bad days all my bones ache throughout my body. Calcium, vitamin D, and bananas help.
*Vitamin D deficiency: I never had this problem before. I think this contributes to the diarrhea issue. I take 2 Viactive supplements a day.
*Migraines, including tooth pain and jaw pain that shoots up my head and down my neck: I take 2 aspirin, and 1 Tylenol with a cup of coffee.
*Gastritis, inflamed lower esophagus and inflamed voice box...but middle esophagus is mysteriously fine: I take probiotic or eat yogurt.
*Foot pain when I stand up. Tingly or itchy skin at times.
*Blurred Vision & light sensitivity.
*Hair Loss: My hair is about 1/3 as thick as it used to be. I have a nice little bald spot up in front. Luckily no one notices because I part my hair on the side. I can no longer part my hair in the middle. Also, no more bangs for me!
*Violent Chronic Dry Cough: This is debilitating. It's non-stop, 24 hours a day, 7 days a week. I can't sleep, can't eat, can't talk, lose my voice, rip muscles in my chest, throw out my neck which causes a migraine, gasp for air, and finally end up limp and lifeless after 2 days without medication. This started 2 years ago and hasn't gone away. They tested me for allergies, asthma, acid reflux, sarcoidosis, GERD, Crohns, IBS, H-Pylori, heavy metal poisoning, cancer, and on and on and on. Be careful of false asthma diagnoses. Now they're thinking it may be neurological which makes me think it may have something to do with Lupron. Does anyone else have this problem? Nothing works except a small dose of a narcotic. Tussienex works (half teaspoon, twice a day) but it makes me sleep 16 hours a day. Codeine cough syrup only works if I take a large dose, and it also makes me sleep 16 hours. 2.5mg of vicodin, 4 times a day works without making me feel like a zombie. Or 1mg a day of methadone will work. I'm hoping someone else has this problem too, and can help me find another way to fix it without having to take narcotics. This is actually why I'm trying so desperately to lose weight right now.
Posted by gabe
lupron injectons all meds seem to have side effects. but lupron has more harsh effects. i was told i had prostate cancer and what to do varies from removing it to radiation trements. i went with radiation i have a gleason score 0f 8 and a psa 0f 5.7. along with radiation i am on lupron. lupron puts about 15 percent help on the cure rate with radiation. but makes life a little bad with hot flashes and no sleep for the flashes comes about 1 a hour. some light bone and head problems such as being dizzy. i have been on the lupron for 80 days now and hope things does not get worse. i have 43 radiation treatments and as of today i have 14 down and 29 more to go, so what is one to do. most research i found is better cure rate with the lupron, you can check this on youtube. just type in prostate radiation treaments.. and it will give more info
Posted by Quanda Smith
I am flabbergasted reading all of these statements! I had endometrosis and adenomyosis I was treated with Lupron for years 2001 til I had a total hysterectomy in 2006.I have tremendous joint and bone pain and what I felt was alopecià , anyone else have permanent hair loss?
Posted by Mike O
My dad has prostate cancer & lupron was suggested to him by his cancer Dr to help lower his psa. He already had surgery to remove his prostate but now was seeking treatment to keep his PSA low. Before taking this drug he was not feeling sick or in any pain. After the 1st shot he was fine but slowly started developing a stubborn cough & shortness of breath. We thought nothing of it & never linked it to the shot. We thought he was just developing COPD. He took the 2nd shot in Aug, 2015 & that's when all hell broke. Within a month, his eyesight starts to worsen badly, memory lapses, frequent falls or fainting, excessive fatigue, gasps for air to breath, swollen feet, lost alot of weight. Currently my dad is in a Dallas area hospital bed-ridden fighting for his life because of this poison called Lupron.
He has taken every test but they find nothing wrong with any of his organs. For some reason he now has some fluid in his lungs & no lung specialist can tell us what it is. We went back to the cancer Dr that gave him the shot & he says that unfortunately there's nothing he can do about the symptoms. They should run their course & be over in 6-9 months. We are just praying that our dad will be alive by then. I can't believe doctors are giving people this poison & charging several thousands of dollars for each shot also.
Posted by Lisa
I had stage 4 endometriosis and it was suggested by my doctor to take lupron. He said I would experience symptoms of menapause while on the drug and it would shrink the endo. Well after my first shot I had swelling in my hands but didn't link it to lupron by my third injection I had such horrible bone pain and had gained 30 plus lbs. stillwasn't linking it to the lupron because when I mentioned all this to my obgyn he said lupron doesn't cause this and something else must be going. My memory was horrible even forgot I was driving a couple times lucky for me my eldest daughter was in the car and brought me back to what I was doing. I continued the lupron because I was assured this was the best way to control the endo. And I only had a couple more shots to take. Well by the end of my 6 months treatment of lupron I had horrible joint, muscle and bone pain and my back was killing me. I isolated myself in my room most of the time, I had gained 60 plus pounds and my cholesteral sky rocketed to above 400. I had my last lupron shot in October of 1997 by december 1997 the pain from being on the lupron continued and the pain from endo was back in full swing. By july of 1998 I had to have a complete hysterectomy. We had planned to save my ovaries but the endo was so bad he could not see the ovaries. Know it is 2015 I still suffer from bone,joint and muscle pain. Of course they call this fibromyalgia but my family and I know this all started while I was taking the lupron. Furthermore went to a funeral and while talking with my cousin who I hadnt seen or heard from in a long while told me she was on lupron of course I freaked out she was have poor memory and joint pain she has since been diagnosised with lupus.
Posted by Steve
A year ago, I was diagnosed with Stage 2B prostate cancer. As part of proton beam therapy protocol, which was highly effective, I was put on Lupron for two months prior, two months during, and two months post proton treatment, I was intent on getting the first 3-month shot ASAP to stop progression of the cancer and make it easier for radiation to knock out, but dreaded getting the second 3-month shot. The second and last 3-month shot timed out four months ago. Here are my observations on this drug.
1) For the first 3 weeks, I began to wonder if they gave my the wrong shot. Then during the fourth week it started to hit me pretty hard. Following were my side effects.
2) Rapid loss in libido and sexual function starting week 4. Testicular shrinkage. Semen production dropped to zero. No sex for many months. I expected normal function to return about a month after the last shot timed out. It took four full months for the effects to even START to wear off. I expect it will be six months from the time-out before I get to 80-90% recovery from side effects.
3) Hot flashes typically 2 X per hour. In the end, I did not get a good night's sleep for a YEAR. The hot flashes were so frequent and intense, I was lucky to sleep for an hour at a time--and often less. Four months from the time out, the hot flashes are just starting to be manageable.
4) Impaired vision, which took months to recover from.
5) Joint pain, which still lingers.
6) Weight gain (+15 pounds) to a weight I have never even come close to in my entire life. Still struggling to get the "baby fat" off.
7) Increased cholesterol, from 160 to 237 in just a few months with the same or better diet.
8) Liver damage (GGT came in very high at 130), with no prior liver issues and very low alcohol use.
9) Notable breast growth.
10) Tiredness and general malaise; shortness of breath on modest exertion--even though I have always been in excellent physical condition and continued exercise during treatment.
11) Even with devoted exercise, my body responded weakly to maintenance of muscle mass, strength and endurance.
12) Notable reduction in facial hair growth, which has returned four months post, and body hair, which has not returned.
Overall, I'm not sure if the Lupron was a positive net contributor to curing my cancer, but I have no desire to ever take it again--for any reason.
Posted by Maya Domashitsky
I took 3 shots of Lupron for fibroids and anemia related to it. I had unbelievable energy, but had joints pain and hot flushes. I was always in the good mood, my hemoglobin went up to normal levels. However, when effects of Lupron wore off, I felt horrible. I became extremely weak, chronic weakness. I started to have mood swings, extreme weakness and difficulties to concentrate. Seven month passed after I stopped Lupron, but weakness does not go away, I feel like I am an old person, and I work 12 hours shift.
Posted by Michael Pagliaro
I have been getting Lupron shots monthly for almost 3 years. I have 3 more shots to go. My PSA is O.i. I have the usual symptoms of hot flashes,tiredness,weight gain,etc. I am thankful for the results from these injections
Posted by Ken
For over a year I have been receiving Lupron injections once every 90 days as continued therapy for prostate cancer. HDR seems to have done much in killing the cancer cells with a PSA that is at last blood test .02 (prior to treatment it was as high 7.6). ...but now I have to put up with "hot flashes", fatigue, and a battle to keep the weight under control. I'm thinking I have had enough of this and want to suspend these treatments while keeping a check on the PSA levels.
Posted by Robin Worthington
I had 3 rounds of Lupron my doctor pushed it like no other. Lupron destroyed my teeth and it is awful idk what to do about it cause I can't afford dental insurance I was also told it could be Lupron and fosimax as well that caused it. I also have very bad health problems a long list to be exact most didn't show up till after Lupron and fosimax. Any suggestions on what to do. I only make SSI and in Texas dental isn't covered under medicaid. At the time I heard Lupron was only for men with prostate cancer it hasn't even been approved for women with endometriosis I got my Lupron injections on 2005-2006.
Posted by Donna Bright
Well, yes doctors are still recommeding this drug. My father's prostate cancer has returned. Since he will be 89, chemo, radiation, and surgery are not an option. I am thankful for everyone sharing their story. My father will not be taking this drug. I will ensure that he remains as comfortable as possible.
Additionally if you band together, look for an attorney using Martindale Hubbel. I am not an attorney, my daughter has just graduated law school. I would look into using a firm that specializes in these types of cases. I am very sorry for what this drug has done, God bless each of you.
Posted by Theresa
HAS ANYONE BEEN GIVEN THIS DRUG AS PART OF THEIR BREAST CANCER TREATMENT? I HAD MY 3RD SHOT. I GET THEM EVERY 3 MONTHS. IM DUE IN NOVEMBER FOR MY NEXT ONE BUT I THINK I AM GOING TO TELL THEM I CAN'T TAKE IT ANYMORE. I READ ALL THIS STUFF AND I AM SCARED TO CONT. ALSO ANOTHER GIRL I WORK WITH ALSO HAD BREAST CANCER SHE TOLD ME THAT YOUR ONLY ALLOWED 3 SHOTS IN A LIFETIME. SHE HAD MORE AND ENDED UP GETTING CANCER IN HER OVERIES AND HER OTHER BREAST AND THE CANCER HAS SINCE SPREAD TO MUILTIPLE PLACES IN HER BODY. I NEED HELP AND NEED TO TALK TO SOMEONE ABOUT THIS. THANKS EVERYONE.
Posted by Jose A. DIaz
Ordered by urology 3 injection / year. Treated for
more than five years. Consequences:
Memory loss type AD them treated by neurologist .
Posted by Corky
Please help me,
My pain in my stomach started about a year ago.
It felt like I was having bad period cramps every day and I just thought I was going through menopause. I also was having heat flashes.
I decided to go to the the Doctor in April and they did an exam and ultrasound.
She said I had Adenomyosis a disease of the uterus.
I went to another doctor to get a second opinion she agreed and recommended a hysterectomy but I told her I wanted my own hormones and I'd like to keep my ovaries if possible so she planned on taking out my uterus and cervix.
I had the surgery April 29th.
It turns out I had Endometriosis, Adenomyosis, a cyst on one ovary, both ovaries were yellow and deformed, so they took out one of my ovaries my uterus and cervix.
6 weeks pass and I had pelvic pain, drainage and a fever so I went back and got an internal ultrasound and a CT scan she said I had an abscess on my vaginal cuff. She gave me medication for it.
July 29th I went back with more pain and had a new cyst and more endometriosis on my ovary.
July 29th she removed my ovary and the endometriosis that she could get to however she said she could see that it spread to other organs.
MY question is she wants me to start the shot Lepron!
For two days I have been researching it and the side affects sound horrible.
I'm not in pain right now.
I also read hormones feed the disease so I don't think I should go on Any Hormone Replacement for awhile.
What do you think?
Posted by Bri
I just got the Lupron shot done and all my doctor told me about the side effects were that I was going to have hot flashes and increased pain in my pelvic region for the first few weeks. The first day or 2 were fine and then day 3 started with extreme hot flashes, chills, and crying for no reason. I never knew all the extreme side effects until now and I'm telling my doctor today that this will be the last dose of Lupron I ever get. I have endo and it kills me everyday but because of this shot I have no engery and now I have to go on state disability because I cannot function without being in horrible pain. I'm only on the first week and I can barely handle these side effects and I'm only 24. I feel like im loosing my life to this shot and stupid endo. Thank you to everyone who commented with their experience. It's very informative for me and I hope someone reads this who is thinking about getting this shot and it changes their mind. Never again will I get this shot.
Posted by lacreia white
Hi I'm lacreia white in 2012 I had a surgery and was diagnosed with endometriosis then was put on Lupron said to be a Harmone drug never told was chemotherapy once I done research to find out it was chemotherapy I had taken it for a year and a half 11.25 when I first took it I had hallucinations joint pain falls hot flashes my second dose mood swings slurred speech going to mental health feel like I was going crazy memory laps fogeting things weight gain always tired arthritis diabetes I said to my doctor I didn't want it she say I'm hurting you I thought I was helping you my legs would feel crippling at times now left knee I have to have a knee replacement do not take this drug .even papilatation racing thoughts of suicide.
Posted by Mia
Hi! I know it's been a while since the last post, but I thought I should add my input for those who want to know. I am 16 now; I was diagnosed with central precocious puberty at the age of 4. I was on monthly, muscular shots of Lupron from the ages of 5 to 10. I have yet to experpience side effects from this drug other than mild depression and severe scar tissue on my right thigh. I am, however, very worried about my future. I know that I might have issues with bone growth in the future and I know I am less fertile because of this medicine, but I hope I never experience anything as bad as some of you other strong women. Although I didn't have have a traumatizing experience from this medicine, I still believe it should be taken off the market for everyone's safety.
Posted by Katie
This is a chemo drug, if you're experiencing ugly side effects, that's chemo for you! Unfortunately, for people with chronic fibroids and endometriosis pain; this is one of the few treatments that helps. It doesn't help long-term, but neither does the BC methods or excision therapy.
For me, I had begun to experience some side effects around the end of the 4th month. Oiliness to the t-zone and scalp, some acne, and overall I gained 10 lbs. However, I had this incredible energy and as soon as I stopped taking Lupron I noticed an immense decrease in energy. My headaches are back as well.
I am kind of considering going back on it because I didn't feel like a zombie.
Posted by Sherri
I've had 3 shots of Lupron over a 2 year period because of debilitating fibroids. My doctor told me that I would have some bone loss but not a big deal. It has been two year later and I need hip replacement in both hips. I have a rash all over my fingers, feet and toes. It has corrupted my body. Have hard time sleeping, and I itch at night long. This drug is POISON and I cannot believe doctors are prescribing this crap to people. This is SO wrong and something must be done. We should be able to sue the mess out of whoever is responsible. This drug is RUINING peoples lives!!!! But we mustn't give up..FIGHT for your lives. I have my first total hip replacement in January of next year. I'm determined to get my life back. DETERMINED!!
Posted by Rit
Same story like everyone else. Daughter is diagnosed with Pre-Puberty and prescribed Lupron. Dr. assured no side affects. Reading all this i have a choice not to give this and take a chance with her growth or .....not sure...what to look for
Posted by Debra Lannon
I am a victim of Lupron. A few years of injections every 90 days. Post hysterectomy endometriosis/ovarian Remnant Syndrome. It has destroyed my life. Is there any Doctor out there that won't turn away and stay silent when I say the word Lupron!? I am losing my life slowly from this evil drug. I live in New York.
Posted by Rebecca J.
This is my story: Lupron was given to me by my Dr about 5-6 years ago to help with my endometriosis. Back then there wasn't so much info on it like there is now. My Dr told me the worst things that could happen to me were hot flashes, night sweats and possible bone loss - basically pre-menopause, but this was the best solution for my issue and only people with this issue will feel 100% better and I would feel no more pain or have periods. So what was not to like? And if my Dr was prescribing it, what should I be afraid of? So I got the 3 month shot. After 6 months and I felt ok without any noticeable symptoms, he decided since it works, I should stay on it. I was on it for almost 3 years!!! Then I lost my insurance and went off the shot for years. My endo did come back and I had my second surgery about 3 years ago. I went back to him and he decided to put me back on Lupron and said I tell all my patients this is THE BEST thing to take if you have endo. and I hate having to convince them this is the best way to go. So he put me back on it. I decided to call the Lupron hotline and ask a few questions. Do you know that they told me there were NO studies done on people returning to the shot or long term studies of effects on a person\'s body?? But it is the best thing to take for my issue. I went back on it because I didn't have any issues previously that were linked to the shot. Well this all changed. By my 2nd round of shots, I noticed that I was having a hard time walking, foot pain when I woke up, my hands would be severely clawed & painful and I couldn't move them. It felt like the blood wasn't flowing to them. I developed severe joint pain, groin pain, back pain which I didn't attribute to Lupron at the time, diagnosed with peripheral neuropathy, pre-diabetes and my blood work always comes. I even had bouts of my left leg going completely numb and I would fall! I thought something is really wrong with me it didn't cross my mind it was the shot. I went to WAY to many doctors and nobody could tell me what was wrong and not one of them attributed my symptoms to Lupron. I honestly don\'t know if these doctors are aware of the significant issues this drug brings out of people. I am losing my hair, brittle nails, stomach issues, bowel issues, GERD, kidney stones, IBS, constant infections. I even had my tonsils removed because of constant infections! I get dizzy a lot and the worst part is that my memory is getting worse and I feel I have cognitive impairment. Best part is I just turned 40. I am so angry that my doctor put me on this drug. I have been on it the second round for over a year!! Now that I did more research I found so many more people that had this drug ruin their lives!!! I am not the only one and I would never with this on anyone! It's horrible. And here my doctors kept telling me I was healthy and fine and my blood work results never came back the same! We need to get together to form a class action lawsuit!!! Get this drug off the market!
Posted by Charles Pace
2010 stage 3 prostate cancer suggested no mets choose radiation treatments psa was 7.9
2014 after regular psa testing regular increases doctor did ultra sound, cystoscope, MRI and biopsy all neg.
2014 I then had bone scan showing several tumors two of the largest on spine
2014 Dec. started hormone therapy first month double dose of firmagon, then Lupron depot in 2015 Jan.
Lupron issues have been scary hot flashes, chills, itching have eased up some but cognitive issues have been upsetting memory, multitasking, concentration, decision making are debilitating.
I have not worked since Mar. It is rough stuff there is no way I could function anywhere near the level I should at all. Let alone personally do very little driving and only close by and rarely alone. Can not even do regular daily living things fast or correct. Memory horrible driving is difficult experience lots of bad cognitive issue I am scared. Not even good at paying bills correctly. Bad stuff and you read some things similar but doctors just say it's not the drug. So I am seeing a neurologist, phsiciatrist, and now more tests to determine what's causing my issues, because no one agrees it's the drugs. The costs of this is staggering. But I am 58 years old and need to work but can not function normal at all, if I was 65 I probably would not even complain about this but I am not. I believe there are many people older that do not even report this type of issue do to age and no need to work.
I have stage 4 bone mets cancer yes I am depressed but I was before starting this drug and the cognitive things started after that. Bad stuff but it is doing what they need it to but no one told me I could experience these issues.
Posted by chelsea
I just got the Lupron shot yesterday 3/30/15. I have recurring cysts on my left ovary they have already taken my right ovary. I read on this shot for a few weeks and the reviews are horrible. but unless I took the shot they would refuse a hysterectomy until I was 30. I just turned 26. I have been suffering from this pain for years, so this is my last option. I woke up this morning and my back pain is horrible. I barely got up to take my kids to school. and my insides are killing me. how long does it usually take for side effects to start?
Posted by Belinda
I was given 3 injections in 1993, within two days after the shot I was an emotional mess, after that in less than a month I lost 30lbs. In less than 6 months I was having surgery for Thyroid cancer. From there every 9 months to a year I was being diagnosed with another autoimmune disease. Now in 2015, I have 9 autoimmune diseases, I started with the cancer, then on to Addison's disease, then Fibromyalgia, Rheumatoid Arthritis, Osteoarthritis, Diabetes,Sjogren's Syndrome, Dry eyes and vision loss, Chronic Migraines, Infections that are hard to get rid of. I am on Oxycontin, Dilaudid, Fentanyl Patch, to try and control the pain and give me some quality of life, however even though I have an angel for a doctor my Pharmacist doesn't want to continue to fill my prescriptions, they say it is hard to believe that this drug has caused me so many medical problems that cause so much pain. I have never tried to get any of the prescriptions filled early, never offered to pay cash so that it doesn't go through the insurance company, never violated my Narcotic contract with my doctor, and yet am made to feel like a drug addict. All someone has to do is look at my hands, at 55 I have the bones and joints of a 70 to 80 year old woman. It has been hard enough dealing with the pain from my head to my knees, now my left foot has joined the club, it is a entirely different pain experience when you must walk on something that has Rheumatoid arthritis, and my toes are starting to fold onto each other. And yet each month I am again questioned by my Pharmacist as do I "REALLY" need this pain medication! I have asked them to go online and research Lupron, but do they? NO!!! So, I am printing some of the statements from people like myself and giving it to them, perhaps one night when they are bored and nothing else to do perhaps they will read these statements and stop making me feel like a criminal!
Posted by Tommy
have any women looked into or tried "systemic enzymes".they seem to help endo,and are natural.My dad is on lupron with bad side effects also which brought me to this site.I have been searching for answers to combat his ailments from lupron when I read about systemic enzymes helping women.Go to site and read user reviews of these enzymes.Its not for my dad but if i were a woman its something i would look into.I pray for all suffering from these drug side effects.
Posted by Jillian Crawford
Within a matter of minutes after getting the shot, I nearly fainted from pain and exhaustion. It's been a few days and the pain is so bad that I can hardly get out of bed. I can hardly eat and I worry I'll vomit if I do.
I have endometriosis and they told me no warnings of this shot before they told me I was going to get it. They said there was nothing wrong with it and no reason not to take it. They also said my only options are lupron or pregnancy--I don't want kids, I'm in no situation for kids, I'm not healthy enough to carry a child, and there's a very low chance I'll conceive or if the baby will survive.
Now my back is in so much pain I can hardly move, there's so much sharp stabbing pain in my whole torso I sometimes get shortness of breath, and my fainting problem has only gotten worse.
They nurses said I was over-thinking this since I already get chronic pain from the endometriosis, but the pain was never like this on a regular basis. Even suffering from PID shortly after a laparoscopy never hurt this bad! Being fresh off the operating table didn't hurt anywhere nearly as bad as this!
Posted by Linda
Does anyone know what the options are for Central Precocious Puberty? We were told Lupron but after reading this am scared of giving this to my daughter.
Posted by Lorie parker
I too have been scorned by the plague of Lupron!!! I was diagnosed at 15 with endo and after I had surgery to diagnose a few months later I had still severe pain so he recommended that I stsrt Lupron!!! He said that I could only have one shot in my lifetime and since then I have been on the shots with several doses a year for 14 years!!!! I have none and joint pain all the time!!! I also have a bulging disc in a my back and was also diagnosed with osteoporosis this last year. This is all due to taking Lupron for so many years. I've told the docs of my symptoms and some huah it away while others say that they've never heard of it but after I was diagnosed with osteo they had no choice but to believe it as I had no other risk factors for this. Perhaps the most devastating though is my teeth!!! Since I have depleted calcium levels in my body even with supplements my teeth are breaking off and falling out like a meth head. I have yet to find a dentist willing to work with me as I have no dental insurance. I used to have such pretty straight teeth. Not anymore I look like a 30 year old math head and can no longer smile bc it's too embarrassing!!! I say lets all get together and sue the bastards that gave us this shit!!!! I hate Lupron and despise it's name. You best believe when I hear about a law suit I'll be signing up because I need help with my dental bills!!!!
Posted by Kera
When I was 18 years old, I developed endometriosis. It was not officially diagnosed until I was 28. At this time I began having laparoscopies followed by Lupron Depot shots. I continued these for the next 6 years. Beginning at the age of 30, I began suffering from random symptoms that have been unexplainable. I have spent the last 8 years doctoring at Mayo Clinic in Rochester. I have every test under the sun run on me, most of them many times more than once. I have spent multiple weeks in the hospital. I am in clinics at least once a week on average. I used to be involved in so much. I was the head of our Christian Education program at our church, I traveled all over speaking at retreats, I traveled the world for my work with humanity organizations, I wrote curriculums. I have now lost my job and live with my parents as I can no longer afford to live on my own. I now have to take heavy duty pain killers just to get out of bed and make it to the couch. I can no longer go out as I don't have the energy to go anywhere or speak with people. I have developed severe migraines sending me to the emergency room at least monthly and now requiring Botox injections to help control them, I require nerve blocks in my occipital nerves to keep them from stiffening so tight that it sent me to the emergency room, I have been diagnosed with fibromyalgia, severe muscle and joint pain, tachycardia, chest pains, difficulty breathing, abdominal pain, photosensitivity - including dimness of vision and difficulty with my vision, audio-sensitivity, dizziness, fainting, memory loss, insomnia, nausea and vomiting, unexplained fevers, severe dermatitis in my face, and MRSA infection, Raynaud's disease.
I have begun doing research on my own. I have recently sent for all of my medical files from all of the clinics and hospitals at which I've been treated. I'm trying to find anything that seems to be the beginning of it all. The other day on TV, someone mentioned Lupron and it was like light bulb went on. I immediately Googled "Long Term Side Effects from Lupron Depot" and the National Women's Health Network was the first article that came up, the article from the Womens Health Activist Newsletter, September/October 2008, by Susan K. Flinn, MA. I was in tears. Nothing has come this close to explaining what is wrong. I'm trying not to get my hopes up. But it was so nice to hear of others that were experiencing the same thing as me - not that I would wish this on my worst enemy, but it's still nice to not be alone.
Please could you send me any information you have acquired about these affects, any treatments that have been found to help, any sort of prognosis that has been discovered for people with type of severe reaction, and if there is any way of testing to verify that this is what is wrong. I would like to be able to bring as much literature into my medical team as possible.
I realize not everyone has the same reaction. I understand that since I have a majority of the symptoms, I may have a more severe reaction. My doctors have told me that I have a tendency to respond much worse than most people in anything that I contract.
Any help you can give me would be extremely appreciated. Thank you so much! If you could send it hard copy through the mail, I would greatly appreciate it. Please, can you help.
Posted by Shelley
HI MY NAME IS SHELLEY I AM 51 I WAS GIVEN DEPO LUPRON IN 1986 FOR ENDOMETRIOSIS I WAS IN MY TWENTIES . I HAVE FIBROMYALGIA, ARTHRITIS, SJOGRENS. I BELIEVE THAT THIS IS A RESULT FROM DEPO LUPRON INJECTIONS . I AM IN PAIN EVERYDAY AND SEE A RHEUMATOLOGIST AND I HAVE TRIED EVERY SUPPLEMENT AND PRESCRIPTION DRUG ONLY TO GO BACK TO SQUARE ONE , I CAN NOT BELIEVE THIS HORMONE INJECTION IS STILL GIVEN , IF ANYONE WANTS TO JOIN TOGETHER TO TRY TO CONSULT LEGAL COUNCIL LET ME KNOW , THIS IS UNACCEPTABLE .
Posted by Christine
I had my first injection October 28th 2014, had an adverse events December 8th & 9th 2014. Rushed to hospital with chest pain and breathing problems, told I have Pulmonary Embolism, two clots on the lung on warfarin for life. I had an allergic reaction to this drug, doctor did not check my records for allergies. I was not told of side effects or given a leaflet, only told would soften my womb for surgery.
Posted by Moriarty
I have not had endometriosis or early-onset puberty and thank God I have never taken Lupron. After reading the reports here, I believe that no one should ever take this drug. If a doctor has told you to take it, do not go along with his or her recommendation. You risk going through the agony that women have described in these reports. If you have taken it and suffered bad side-effects, you should get a lawyer and sue the manufacturer of the drug as well as the doctor who prescribed it for you. Please, please if you are suffering as described by so many above, help yourself and try to get a lawyer to represent you.
Posted by Liz
I'd like to start with asking how it is possible that this drug is still being prescribed and why there has been no class action lawyers that have gone after these dr's/pharm co.? I was 20 when I started Lupron and in such bad shape from the endo that I did whatever my supposed endo specialists told me would help... A total of six separate rounds of Lupron between three dr's over a course of five years. The side effects during were awful, but the lasting effects are worse. It has caused me many long term side effects and I have been told by physicians that I have degenerative disc disease, bone loss in my jaw that has caused pain, facial swelling, lymph node/gland problems, TMJ AND TOOTH LOSS! I also have osteoarthritis. I still struggle with endo but bc of this drug, I am in far more pain than before throughout my body due to these illnesses and to the blanket diagnosis of fibromyalgia. Drs need to STOP giving this drug now. It does not work and the risks far outweigh the benefits, esp for endo. It is not a terminal disease that warrants this poison. I didn't know it was chemo and I didn't know it would cause my body to turn like this and age like this.
Posted by Tabby
Do Not take this drug!!! LUPRON = DEATH
I was given this drug as a means to stop unexplained reoccurring infections. It was an experiment and I was told this by the doctor. I had one shot and it has destroyed my health! Every side effect listed I have had. Two trips to the ER because I thought I was going to internally combust. I went from 120 lbs to 150lbs. I have horrible RA and bone spurs and Thyroid desiese. This medicine fried my Thyroid. If there is a future lawsuit I wantto be involved. I was lied to about this drug, not informed it was chemotherapy. I only found out by signing up to volunteer at a hospital that required I have certain vaccinations and could not administer them because I had a recent does of Lupron, chemotherapy, and it would kill me if the two shots were combined. Every Dr and Hospital should have to clearly tell their patient's this is chemotherapy and take this shot themselves.
This drug needs to be removed and the company who manufactures this ' killer drug' Lupron needs to start paying the medical bills of us who have suffered from its ramifications!
Posted by Tayler
Hi, I am 17, I got diagnosed with my second dose of the lupron shot the end of September which lasts me 3 months. I thought it had somewhat helped my first injection, so therefore I did it again. In my sophomore year I started having abdominal pains, later on in my junior year I started having more pain in my abdomin, back, and even my ovaries. I then began to notice that I had ruptured an ovarian cyst. Throughout these few years, I would throw up after eating a few times, I would get nauseous, an get extremely light headed. I had seen so many doctors before my obgyn decided to finally put me in surgery. When he did, he told me after I had endometriosis which was in april 2014. That's when the shot had come into thought because I still had pain after surfery. With me still being on the shot and recently getting my second injection, I feel like it hasn't helped me at all. I feel like the pain has majorly increased in my ovaries, back and abdomin. So I don't know whether or not the shot is actally helping or what to do now. But for some it has helped, but I wouldn't recommend it to everyone.
Posted by Andrea
I wanted to share my experience with Lupron in hopes that it will help someone else make an informed decision. I have stage 4 endometriosis, meaning that it is everywhere, including some of my organs. It has been absolute hell accessing treatment and managing this nightmare. Once I was surgically diagnosed, the GYN insisted that I try Lupron with add-back therapy. He did not adequately warn me of the side effects, and at the time I was far too ill to do the research that I normally do into medications that are prescribed to me. He prescribed what he called "double doses", 7.5mg every 4 weeks. A few days after the first shot, I woke up with my entire mouth and tongue burning, it was as though I had swallowed a mouthful of scalding hot water. It was so bad that I could not eat or drink and when I went to the dentist she said that I was suffering from "Burning Mouth Syndrome" which can happen in menopause. Along with burning mouth, I was suddenly extremely depressed, crying constantly and questioning the meaning of my existence. Even with add-back therapy, I was waking up in the middle of the night completely soaking wet, with pools of sweat in my ears. It was not just a little dampness, we had to get up and strip the bed, it looked as though I had wet the bed when I had not! I reported this to my GYN who of course told me that I needed to see a psychiatrist because I obviously had emotional issues! I was emotionally healthy before Lupron. I felt completely crazy on Lupron, abrupt mood swings, hysterical crying for no reason, was completely unreasonable and a nightmare to deal with. I could hardly stand being around myself, I cannot imagine how my partner felt. The GYN said I needed to continue with the Lupron, because I needed to know what it would be like to be in menopause if I did have a hysterectomy. In total I had 12 shots at 7.5mg over 11 months. It did nothing for my pelvic pain. I bled the entire time I was on Lupron, to the point of developing severe anemia. My hair fell out in clumps and what was left thinned out. I looked like I had aged about 15 years in a few short months. I gained 20 lbs which of course the GYN blamed on me, even though I had no appetite and was barely eating. I had my last shot of Lupron in September 2012, and my hair is still growing back. Since the Lupron I have developed excruciating joint pain, hips, knees, feet, shoulders, wrists, back. This joint pain does not respond to much in terms of medication and has drastically changed the quality of my life. I have also been diagnosed with TMJ, and have a lot of pain in those joints as well. I ended up having a hysterectomy, and originally kept one ovary for hormone purposes. I have since had to have that ovary removed because the estrogen contributed to endometriosis continuing to grow even after it was removed surgically. My ovary ended up "falling" onto my bowel, which is apparently quite rare. After having the ovary removed, a few days after I again developed the intense burning mouth syndrome, so it is obviously related to low estrogen and menopause for me. I have never physically been the same since the Lupron injections. I struggle with low energy, cannot do half of the things I could do before Lupron, I simply have very little stamina. If I could rewind the clock I would NEVER have agreed to Lupron, never mind so many doses at 7.5mg. The joint pain is so severe that it wakes me out of a dead sleep and keeps me up at night.
Everyone reacts differently, and perhaps there are some people that Lupron works wonders for, but I am not one of those people. I have done extensive research about Lupron and many women complain about the same symptoms that I experience. It has been such a terrible experience that I am looking for a class action law suit in Canada, because I believe Lupron has permanently damaged my joints and ruined the quality of my life.
The cost was $600 per injection, but fortunately covered by my benefits. After $7200 in Lupron injections, this is what I have been left to deal with.
I have since found a new GYN and when I explained to her how Lupron affected me she said that Lupron makes a lot of women feel crazy. If this is the case, why is it still prescribed to women with endometriosis or any other condition?
Please do your research before consenting to Lupron. If you do decide to do it, be sure that you are getting add-back therapy in the form of estrogen and progesterone, because when the Lupron kicks in and you are suddenly in menopause, it is HELL. Absolute and complete hell. Honestly, there are no adjectives to convey how absolutely horrible I felt on every possible level. To go from a relatively happy, upbeat person to severely depressed and contemplating ending my life was a horrible experience, and I really don't know how I made it through that terribly dark time.
I am not trying to scare anyone, I just want to share my experience that will hopefully spare someone else having to go through what I went through.
Good luck to all of you!
Posted by Lyn
Hi Sara- Responding to your post. I am so sorry to hear about your struggles with endometriosis and I truly understand your struggles.
I am preparing to have a laparoscopy myself in 2 weeks. I was diagnosed with stage 4 endo this year and, of all things, had a hernia repaired that the doctors say was caused by the endo. I have struggled with extremely heavy bleeding and cramps strong enough to bring me to my knees and render me bedridden for years, I am now 30.
My doctor has suggested administering the Lupron to shrink whatever lesions remain after surgery. In the past few days I have done extensive research about Lupron and, quite honestly, I am shocked and horrified by what I have read about this drug.
You are right, it is a chemo drug. I had been struggling to make a decision, trying to choose "the lesser of two evils." My ultimate belief is that this drug has too many potential long-term side effects. I do not believe that a chemotherapy-strength drug should be administered to a non-terminal patient.
I believe there are natural ways to lessen the pain, such as avoiding foods that can cause inflammation. Also, soy is known to contribute to excess estrogen, which I understand is one of the likely causes of endo. Glance at the ingredients list of most food sold in typical grocery stores and soy/protein is listed as an ingredient. It's sad that with so many women and girls suffering from this disease, there is so little understanding of the root cause(s).
Avoiding sugar is also a common suggestion I have come across for alleviating pain, although a definite challenge with so many processed/refined foods being sold.
My number one recommendation would be to build a strong support system of family and friends. March is national endometriosis awareness month I believe. Educate your loved ones and explain the facts about endo.
I have received tremendous support from a select few close family and friends. Without them, I could imagine this disease quickly wearing me down to the bone.
Best wishes to you
Posted by Fallon
I was on Lupron for 2 1/2 years for endometriosis. I have now been off of Lupron for 10 years, and STILL have side effects!! It was the worse decision of my life! I was only told of hot flashes, and slight menopause symptoms as side effects. I went from 115 lbs to 156 lbs in 2 months, and continued to increase in weight even after the treatment. Severe emotional changes, hot flashes, joint pain, major hair loss, facial hair growth, thinning dry skin, constant feeling of a UTI even though I didn't have one, constant bladder pain, severe fluid retention, bone loss, constipation. The major problem is most of the side effects never went away, even 10 years after I've been off of it!! I have been found to have thyroid issues now since Lupron, I still have bladder issues, constant weight gain, hair loss, thinning skin, severe fluid retention in my abdomen, low blood pressure, shortness of breath, muscle and joint pain. Thanks to Lupron I already live in Hell.... I sincerely hope Karma finds the people who make it, and who approved it.
Posted by Jeanne Walsh
my 8 year old daughter was put on Lupron for CPP in 2008. We moved states and her new endo upped her medication to 15mg and then again to 22.5mg. We started noticing severe depression in her , bone weakness and pain so we took her off the medication in 2011. Within months her depression lessened. Now at 15 she has been diagnosed with fibromyalgia, TMJ,( oral surgeon says she has the jaw joints if a 60 year old woman), degenerative joint disease, arthritis, depression, migraines, hot flashes etc. she will be homeschool starting next semester because she is in too much pain and she will miss out on the last half of her jr. year and her whole Sr. Year! Both her endos are unsympathetic and don't believe Lupron caused her problems even though she was completely healthy prior to Lupron. I'm so disgusted with the medical community, I will never trust another doctor.
Posted by Rachel
Thank you for your comments, they were helpful in making my decision. I have stage 4 endometriosis and my Dr. is very adamant that I get on Lupron. Not over my dead body! There has got to be another option for me so that I can have babies. I'm going the natural route, I would rather try invitro and then adoption. Why would a Dr. want to prescribe poison? Conspiring men in the last days, out to make money. May someone find a cure for this wretched disease.
Posted by Melinda C
In 1994 my daughter was diagnosed with precocious puberty at 9 months old. Yes 9 MONTHS old. Her doctor put her on Lupron injections once a month then after about 6 months of treatment she developed soreness at the injection site and her prescription was changed to subcutaneous injections daily to be administered by myself. I injected my daughter daily with this poison for 9 years. Yes 9 YEARS. I was told by her doctor to give her the medication until she turns 10 years old and will be ready for the normal age of puberty. I was also told that there were no known long term side effects. My daughter is now 20 years old and has suffered from pain and soreness in her neck, back, hips, arms, wrists, hands, fingers, legs, ankles, and feet. She suffers from fear, anxiety, depression, and has self harmed. There are days that she cannot get out of bed and times when her fear, depression and anxiety are so out of control that she sleeps all day and stays up all night. It doesn't seem as if any doctors understand or care what she has gone through and all the psychiatrists want to do is prescribe her more medications. She refused to take the anti-depressants as she fears that the side effects of those medications may cause suicidal thoughts or actions and she is not willing to take that chance. She has been denied SSI/Disability, has no job... She cannot sit or stand for very long. The worst part of this is that I injected this in her and I have no way to help her. LUPRON needs to be taken off the market NOW!!!!
Posted by Linda
I hate Lupron,
side effects are horrible, depression, anxiety, no appetite.
i only had one shot and i want this stuff out my system.
my anxiety is real bad.
Posted by Sara
I had a laparoscopy in June 2014 and i have had many second opinions. all the doctors want me to go the Lupron route. i had finaly made up my mind just to do it. then i went home and i could not sleep i couldnt get it off my mind. did i make the right decision? am i sure? do i really want to take this lupron? so i have had many second thoughts and i have researched for months. can the risks really outweigh the benefits? i am not sure of it. now i am not sure i will take this risk. it seems very seldomly i hear something good about it. its as if everything i find has atleast one negative factor about it. the doctor asked if i would rather be in pain, or try this, but quite honestly i cant take the pain any longer. there has to be something else i can try, i cant give up but i also dont want to put poision in my body. any suggestions? lets face it, its chemo.
Posted by Jennifer
I was administered Lupron at the University of WA for endometriosis. My body was put into chemical menopause. I suffered great depression and extreme behavior. When I went to the Doctor at the UW Fertility Clinic months after I had been on the therapy to complain that the symptoms were on-going and physically/emotionally painful he told me it "was all in my head". I have had problems since. Including problems with facial hair, sex drive and on-going menapausal symptoms and depression.
Posted by cheryl
My daughter went into early puberty at age 7. I was told by numerous doctors she needed lupron injections every month until she was 11. I was told if she didn't get these shots, she would not look normal when she got older. I might add they never told me they cost $900.00 per injection. I worked hard to help pay for these shots as I thought I was helping my daughter. I never questioned the doctors because I thought they would not give a child something that was bad for them.
Well, my daughter is presently 13 years old. She got her period at 12 and is presently 5'4" tall. I am still hoping for a few more inches of height since her sister is 5"11" tall. However, we have some strange things going on at the present time. My daughter has been diagnosed recently with Dupreyten's Contracture and we have been told she needs a test to see if she also has remetoid artharitis as her fingers are bending over and she can't lay her hand flat. I am beyond scared that these shots had something to do with this and I let them give them to her. No doctors will ever tell me the truth as I have asked! Need I say anymore. She has no pain---yet however.
Posted by Elena
Thank you to all of you cor your posts, I'm emailing my OBG doctor tonight with a copy of this web site hopping he would stop prescribing this shots. I would try something else for my endometriosis. Ill pray for all of you to find a medicafion that would help you to get better.
Posted by Gigi
We are Asian parents & my 6 year old daughter also diagnosed with pre puberty still need to confirm with additional blood work & X-rays .
Need help to understand what is luprone? Endocrinologist we went also told us if result come positive my daughter also need to take injection every 3 moth to stop early puberty? Is that same injunction you guys r talking ? Lupron injections are used to stop early puberty ?
Posted by Heather
My husband and I are were worried about our 6 yr old daughter going through early onset puberty. So as normal parents, we took her to the Doctor who in return referred us to an endocrinologist that suggested we put our daughter on Lupron injections. Well we did this and after the 2nd injection I started second guessing myself and the doctor. My daughter would have to have these injections on fridays because after she got them she was in so musch pain she could not walk. She had many bone scans, ct's, and even a MRI. These injections went on until the age of 9 1/2 when I finally said we are done! The Dr tried to talk me out of it by stating that she could end up getting her monthly friend.I said she is going to get it anyways sooner or later! That was the last time we seen that endocrinologist. Now my daughter is 16 years old and we have had the WORST side effects from this ever! This injection has stunted her growth, she has gained weight, she even has pre-menopausal symptoms. In the last 1 1/2 half it has been getting worse. She has shrunk in height by 1 1/2 inches. She now has IBS and has become lactose intolerant. Her bones ache and it is getting harder for her to play sports. She has hair growing on her neck and a few spots on her chest. As she is getting older, the symptoms are getting worse!!!
This company needs to be sued!! My daughter has and is going through hell and as a mother there is not a damn thing I can do about it!! Her father and I feel horrible that we put her through this misery. For anybody who is reading these, DO NOT TAKE THE DRUG!!!!!! We need to stop them from hurting anyone else!!!!
Posted by Elly
I was injected with Lupron Depot 1995, and went from size 6 to size 18 in just few weeks. I had severe chest discomfort and hot flushes.then i was diagnosed with haital hernia and ischemia. By total body was so extremely stiff i could not do nothings, not even my daily activities.
When I was driving my car, my hands and neck stock and could not turn my neck right or left and could not take my hands toff the steering wheel. I was told by the Doctor to drink lots of milk. Indeed I was drinking lots of milk to avoid osteoporosis. That was a big lie. The very moment I was injected with Lupron, osteoporosis spread all over my bones. Triglycerites increased, and had heart time breathing. My lungs were very stiff and could not breath well. My belly blow up like I was 9 months pregnant. Everybody was thinking I was pregnant. Though I did not have a husband. had hart time breathing.
BP increased, braking of the skin of my legs, I thought I will die with this chest pressure and my bones shatering.
I could hear my neck bones cracking and it does that to this very day every time I turn my neck. I got very short now and my face shrinking due to the osteoporosis.
I have HTN. Many Doctors I have visited have no clue about Lupron Depot, and did not took me serious about my problems. In Michigan we cannot sue a Pharmaceutical company. Thanks to the republicans. Now I am fat with heart problems and no one can help me to sue those bastards who destroy my life. From the time I was injected with Lupron, by body Never recover for the better. I feel I am doomed. MICHIGAN REPUBLICANS GO THE HELL!
Posted by Mona Hawks
I was diagnosed with fibroid tumors back in 1998. I was newly married and trying to get pregnant. I had always had horrible peroids, so finally had an answer as to what caused them. My doctor put me on Lupron Therapy to shrink the tumors so he could do a myomectomy to remove the tumors. Hopefully buying me time to get pregnant. I was on Lupron for three months before the surgery. It made me feel horrible. The hot flashes were so bad, I always felt bloated, I was very emotional, and never ever felt good. I had the myomectomy in December of 1998. By May of 1999, the fibroid tumors were back. Three more months of the Lupron, with surgery scheduled for August to take the tumors off again. When they opened me up, I was a total mess. The fibroids had totally taken out my uterous. The said I didn't have a uterous left. The fibroids had grown so much that they adhered to all my organs....colan, bladder, liver. I was in surgery for 12 hours. I was also septic. My doctor told me that I would have died had I not had the surgery that day. So of course, had a total hysterectomy. But 15 years later, I still have awful hot flashes. I started gaining weight right after the hysterectomy and gained about 30 pounds. I eat like a bird just so I don't gain any more weight. I have headaches, joint pain. It has definately affected my quality of life. I don't sleep well, and my eyesight got really bad afterwards. If anyone would ask me about taking Lupron, I would tell them to definately find another route to take.
Posted by Nickolle Doyle
I am 24 years old , and I am at the end of an 8 month cycle of Lupron Dpeot 3.75, lets just say this has been the longest 8 months of my life, it all started when I had a laporoscopy done may of 2013 and got diagnosed with endometirosis I started my lupron in July and i have been nothing but miserable , of course the expected menopause symptoms came along with it, I have not felt ok or normal not even for a day in so long and i went from being perfectly healthy and fine to everyday of my life I am in pain, or tired or sad , my anxiety has gotten much worse i still refuse to take medication for it , Every single day there is something wrong, my boobs hurt, im tired nauseas , i have a headache , my body is sore, i used to dance, cheerlead, was a JROTC Raider , and now if i take a bike ride with my child I am miserable and in pain. This medication has done nothing but destroy me and my hair and nails and has not made anythign better, i I have bled for weeks at a time when i was not supposed to have had cycst burst and form when the medication is supposed to help with that and lets not talk about the weight loss I have expeirienced as an already small person and underweight as it is dropping 2 lbs a week was not healthy before lupron i weighed 125 now i am lucky if i can get past 110 I cant even eat like i used to and lets not even talk about the mood swings and what it has done to my once happy and bubbly self , Honeslty if I could go back I would not take the Lupron. I honestly pray for one day that i just feel ok even if it is for a hour
Posted by Laura
I have been having increasing problems with abnormal, frequent, heavy periods, clotting, nausea/vomiting, pain during sex, pain in lower abdomen/pelvic region. Financially, I was not in a good place to have regular visits to the dr and try and get treatment for this for several years. Things have changed and now I am able to afford care, so I went to my gyno and explained my issues. He is also my mother/grandmother's gyno, so he is well aware of the large family hx of female issues/cancers. After ultrasound, 2 growths were found on my right ovary, increased vasculature on the outer portion of my uterus that made it look, as my dr described it "angry and painful". He diagnosed me with adenomyosis and we began to discuss treatment options. Previous bad experience with BC and with hx of smoking and being over 35 put that option to rest. He suggested ablation, but was concerned that he wouldn't be able to treat deep enough to fix the bleeding (which would not help with pain or ovary issues). Final option was hysterectomy, which I was fine with. I have had 3 children and had a tubal previously. When I asked him which option he would pick based on symptoms and family hx, he chose hyster, and I agreed.
Unfortunately, my insurance company didn't agree and denied my pre-authorization for surgery. I requested appeal and peer review of my claim and was again denied, citing "not enough conservative treatment had been attempted". The insurance company said that I have to do Lupron for 6 months before I can re-submit for surgery. Basically, I am being bullied and coerced into this treatment by doctors that know nothing about me or my issues/family hx. My doctor is NOT happy with the insurance company and the decision. I have been reading all I can find on Lupron since being told this and can tell you that I plan on telling my dr to tell the ins company to shove their best treatment plan where the sun doesn't shine!! I will not be taking this poison and will continue to suffer and try to find alternate treatment to take in order to document enough "conservative treatment". Hope that nothing goes wrong during the waiting game!
Posted by Lou Ann
After years of horrible menstrual problems I was diagnosed with endometriosis in 1989, and after multiple abdominal surgeries my ob/gyn prescribed Lupron that I had 2 injections. The only side effects that I was told about was that I would have menopause symptoms and the ONLY long term side effect was the possibility of Osteoporosis. A year later my endometriosis had returned again. My ob/gyn referred me to a reproductive endocrinologist who prescribed Lupron for 6 months. Again I was told the same information about the side effects. Two years later I had an abdominal surgery that my surgeon thought was going to be an Umbilical a Hernia repair. He was incorrect, I had an large mass of endometriosis in the wall of my stomach that was most likely from having multiple laparoscopies that I had had to remove the endometriosis. I went to my ob/gyn he put me back on Lupron, but I only had 1 injection this time. After that I have had 5 more abdominal surgeries because of the endometriosis which has caused severe reoccuring adhesions which have affected both my bowel & bladder. But those problems was something my doctors can explain. Several other health problems that I have just seen to keep getting worse. In the last 3 years I have been diagnosed with Fibromyalgia, chronic pain, spinal stenosis, degenerative disc disease with bulging disc in my lower back and both bulging & protruding discs in my neck, tendinitis in both elbows, wrists & knees, osteoarthritis, & asthma. These illnesses have changed my life from an active one to not being able to function most days. I've been on disability because of the adhesions and the problems they cause.
I have been getting epidural cortisteroid injections in my lower back and neck, multiple medications to treat the fibromyalgia, and other meds for my abdominal chronic pain.
Posted by Tabatha Evans
I'm taking lupron for uterine fibroyed and I'm due for another injection next month I did had hot flashes I did had sex I took a blood test for an pregnancy test and it was negative but I have not started my cycle I think that I started menopause at the age of 35 also I have a little bit of hair
loss when I comb my hair thank you for your statement
Posted by bc
I am taking the daily lupron shot as prescribed by my ivf dr. I'm trying to be a gestational carrier for a friend. Started the shot (second round) on 3/14. By 3/26 I had a large 9cm by 5cm cyst on my thyroid. That was drained today, doctor drained 42 ccs of fluid from it. I'm supposed to do another two weeks of these shots so that I can be a carrier. Scared of what the long term damage is going to be. I have never had thyroid problems in the past.
Posted by Kristin
My 7 year old daughter just had the 3 month Lupron shot last week. The endocrinologist assured me that there are no side effects and no long term side effects. She eventually convinced me to put my precious little girl on this drug because her bone age showed that of an 11 year old rather than her actual age of 7. I could not find any information on Lupron with children other than what Abbott puts out for people to see. I thought I was helping her by putting her on this drug but now I am not so sure after reading all of your input. She has mentioned hearing things and feeling disoriented ever since she got the shot. She is also hot much of the time. I wish someone could explain this to me/us without there being any other motives (i.e. kickbacks from pharma companies). The endo said she receives nothing for prescribing Lupron and said that none of her other patients have had any problems on the drug. I hope I didn't just ruin my daughter's life by believing this drug could help her...
Posted by Carrie
I received 2 shots last year (Nov/Dec) after having a diagnostic laproscopy, hysterscopy, d&c, and ablation as a diagnostic tool for adenomyosis. It took about 4 days to kick in and feel the full effects. I can't believe how much havoc it reeked on my body with only 2 shots. Three days after my 2nd injection I was told not to come in for anymore injections because it was detrimental to my health and I was scheduled for a hysterectomy 2 months later. I was already a cardiac patient before the shots, it made my heart worse, I gained 50 lbs in 2 months, extreme bone/joint/muscle pain, insomnia(still an issue), extreme vision changes for the worse(now wear bifocals), flip flopping between constipation/diarreah,inability to maintain consistant body temperature(feet would be ice cold to touch and upper body would be hot to touch), extreme fatigue, extreme muscle weakness. And the list goes on. I was very active and excersized an average of 5 days a week before the shots, after the 1st dose that was cut in half by the 2nd week, after the 2nd dose I couldn't walk up the stairs in our house just to read my daughter a story before bed. My last dose was Dec 3rd and I had surgery Feb 3rd. I had immediate relief after surgery for the pain of the adenomyosis yet sadly I am still struggling from the side effects of the shots. I was only told that the side effects were those like menopause hot flashes andmaybe gain about 10 lbs. I still would have had the injections because my insurance wouldn't approve the surgery until we did more diagnostic tests etc however I would have been able to prepare myself for all the side effects and would have brought my cardiologist in on appointments for consults. Please take a lot of consideration before taking this medicine and research everything you can about it first.
Posted by Emma
I underwent a three month cycle of the lupron depot injections when I was 16 to treat endometriosis. I had severe depression, hot flashes, nausea, and exhaustion during the treatment, all of which subsided shortly after the treatment ended. However, it is five years later and I have been struggling with depression, anxiety, and mood swings that I never had before. I thought I was going crazy and had suspected the lupron may have been the culprit but had no way to be sure. I was shocked to learn that there had been no studies on the long term effects of lupron. But it is comforting to know that I am not going crazy and I'm not alone in thinking lupron caused these continuing mood swings/depression/anxiety.
Posted by Marnie
I received three injections of Lupron Depot over a period of three months to reduce the size of fibroids, which were later removed surgically. While I was on the drug, I suffered from many of the side effects mentioned here. It took about 6 months (after the last injection) for most of the side effects to subside. It has been approximately a year since my first injection. I am left with extreme pain in both my shoulders (injection sites). I have not slept through the night in months. The pain is excruciating! Doing simple chores is very difficult, even washing my hair, getting dressed, etc....causes severe pain. I have spoken to Health Canada and they have "opened a file", but have no concerns. I have called Abbott and they refused to speak to me. My pharmacist called Abbott and they were told there was no data available. I have been in physio for the past 4 months and I wonder if I will ever regain the strength in my arms and be pain free?!?! I am 48 years old and I regret taking this medication!!! I'd love to get my "normal" life back!
Posted by Avery
I am 36 and was given lupron for stage 3 endo. Was told side effects would be temporary menopause, hot flashes and possible depression. I have a history of SVT treated by ablation. After my first injection, the pain was unbearable. I had a hysterectomy a month later and was told I had to follow with a second lupron injection because it was the only way to kill the unseen endo cells. After surgery I had 3 cardiac episodes in the hospital and they still gave me the injection. Since the second injection, I am bed bound. I am on a 30 monitor for my heart for PVCS, Svt, and bradycardia. I am unable to do anything without feeling like passing out and have debilitating nausea and fatigue. Despite all of this, the urogyn tried to give me a third injection, saying I needed to "work through the symptoms". Not ever going back to him and hoping my internist and cardiologist can help me have a normal life again. I agree... It's like poison. I would take the pain over this any day!
Posted by Sarah
I'm very thankful I found this site. I have a long history of endometriosis, ovarian cysts and hemorrhaging. My doctor put me on Lupron, as she refused to do a full hyst. I had one shot last week, and I can say with confidence that I'll not be getting another shot. I found it odd, at the time, that she was elusive with the details of what I might experience for symptoms. Within 10 days I have: gained weight, I'm extremely tired and dizzy, I'm emotionally numb, I have headaches and acne, I've had muscle pain and really acute joint pain, and I'm constantly wanting to fall asleep. Thank you for sharing your stories.
Posted by Selena
I was told that my fibroids are so large that my uterus is the size of a 5 month term pregnancy. And that my iron levels were so low from the excessive bleeding that I would need a blood transfusion prior to surgery. My doctor encouraged me to take the single 3.75 dose of Lupron to shrink my fibroids and make me a candidate for a laparoscopic full hysterectomy. I was in no way prepared for the side effects, especially since I already suffered from migraines. My menstrual cycle lasted for two weeks. Immediately after that I suffered the worst migraine in my life. The nausea and vomiting was so intense I lost 5lbs in 2 days. I have had a headache of some degree almost daily. And to top it off, now my hair is falling out in clumps! God only knows what’s next and how long these side effects will last. I would have NEVER agreed to the shot, if I had known then what I know now.
Posted by Donna Norton
I was given Lupron in 2008. I was denied proper medical treatment because I reported the horrible side effects to every physician I sought help from.On Nov.7,2013, I was diagnosed with Osteoarthritis, Arthritis, Glaucoma and Anxiety.I will not give up until someone makes them pay for all the suffering I have endured. I was misled about this drug from my physician and ABBOTT LABS. The physicians played around with me so that I could not sue, but I have learned that the drug company can be liable for the Product. I know that this is going to be one hell of a fight, but I have nothing to lose, Lupron has already taken my life away!!!!!
Posted by Wendy
I am looking for information on long term side affects of Lupron. I took it as a kid approx. 28 years ago for early puberty. I took a daily injection for 2 years. As an adult an gyn. Gave me shots for endometriosis. However, I have horrible health problems and no seems to be able to explain why. I had a full hysterectomy at 22. I have osteopenia, a-typical migraines, joint problems, early onset of arthritis (extreme in certain areas of my body), vision problems, blood clot disorder and advanced disc degenerative disease in my neck and back. Can anyone help? I am now 35 and falling apart and no one can explain why.
Posted by Trena
I took Lupron for 6 months in 1998. It totally changed my life. I was 136 pounds and healthy. Within 6 months, I had to change my wedding dress 2 weeks before my wedding to 2 sizes larger and then continued to gain weight until I had gained 90 lbs. I felt horrible the entire time. I struggled to stand for I felt like I would pass out and I was so weak I could barely climb my stairs. The first thing to go bad was my thyroid. Then, I was diagnosed with fibromyalgia and chronic fatigue. My doctor thought I had adrenal fatigue because all of the symptoms were there, but the adrenal tests came back fine even though I could faint afterwards. My cortisol was extremely low in the mornings but would be about average by bedtime so getting out of bed and working was a struggle. My body temperature got screwed up - it would go low for a while or I would stay at 100 for a while. I have since been diagnosed with POTS (postural orthostatic tachycardia syndrome) or dysautonomia and struggle to stand for very long because my blood pressure changes and my heart rate increases. There have been severe times when I try to walk and just melt to the ground and have to crawl to get around. The symptoms continue with diverticulitis and I am scheduled to have a hysterectomy. I have a hard time keeping a job for long because I get very worn out and my symptoms increase dramatically whenever I get a cold or anything so I have a longer recovery time than your average person meaning missing more days than what seems realistic. Plus, my husband's niece took Lupron and she and I can go down the list of the same exact symptoms that have occurred to both of us after having taken this drug. I make sure to warn others to not get near the stuff. I could go on and name more things but at least this is a start.
Posted by Nicola Walker
Hi, I have stage 4 endometriosis, at age 30 I had a four hour operation to remove the lesions on my ovaries, tubes, colon, bowel and bladder. I then started on the lupron injection monthly. Afterwards the pelvic pain did not return and further scans have confirmed that the lesions have not grown back and I am pain free. After 12 months I moved on to the higher dose administered every three months. I have now been on lupron for just over 5 years. As I have not reached menopause yet my consultant also has me taking HRT and vitamin D supplements. This will then hopefully reduce the chances of my bones thinning. If I was asked if I would want to stop taking the lupron injection my answer would be - hell no. I would hate to go back to the way I was prior to my operation and the start of the injections. As a precaution I also have a bone density scan every two years. My consultant has said that as long as I feel ok and my bones remain ok, I can remain taking lupron until I reach menopause.
Posted by Sarah
I took lupron Depot for for 6 months in 2006. It is the worse drug I have ever taken in my life. Emotionally I was completely miserable. I felt so hateful I couldn't even stand myself. I would NEVER take it again and would not recommend it to anyone else. Joe and Michael talk to your wives about stopping the treatment. It's a horrible drug.
Posted by Maryse Dezulmat
I took Lupron shots in 2011 for heavy bleeding. Shortly there after, I suffer from depression and anxiety and it is mostly when I'm driving.
Posted by shannon
My 7 year old daughter has an appointment today at a pediatric endocrinologist for precocious puberty.
THANK YOU EVERYONE for your candid posts. I am sorry for all the pain and suffering that this drug has caused in all of you.
Until i read these posts I had no idea this drug was so dangerous. I took a course of lupron when my daughter was conceived through IVF. I have some of these same symptoms, but not severe. I was searching on line for long term effects of lupron use because I know it is a treatment in some cases for early puberty when I came across your posts. Shortness never killed anyone or gave them a life of constant pain. My daughter will NOT be taking this crap!!
Thank GOD for the internet!!!
Posted by Susan Staley
I had Lupron during the one and only round of IVF we could afford. Since the IVF, I have become very depressed, moody, irritable, weight gain, joint aches, and exhausted. I was a very active person and now I seclude myself as much as possible. My husband noticed the change in me and said tht maybe it would go away. That was in 2007/2008. Here it is 2013 and my symptoms are not only worse but my marriage is suffering. He told me that he was sure it was the IVF treatment that has caused me to be this way. I wasn't quite convinced until reading about the long term effects of Lupron. I don't know where or how to get help. I hate feeling like this. It's not who I am and I just want my life back.
Posted by David Redwine, M.D.
In 2011, I obtained the proprietary studies which brought Lupron to market and found many disturbing things. I wrote a nearly 300 page report of my findings and gave them to the FDA in late 2011. The FDA is near completing a 2 year review of Lupron guided by this report and will reach some type of determination by mid-November, 2013, although the government shut down may affect that target date. I hope they do the right thing and remove the drug from the market and get the US DOJ involved.
Posted by David Redwine, M.D.
In 2011, I obtained the proprietary studies which brought Lupron to market and found many disturbing things. I wrote a nearly 300 page report of my findings and gave them to the FDA in late 2011. The FDA is near completing a 2 year review of Lupron guided by this report and will reach some type of determination by mid-November, 2013, although the government shut down may affect that target date. I hope they do the right thing and remove the drug from the market and get the US DOJ involved.
Posted by Joe Simone
Michael, I am going through the same thing. Everything negative thing that happened in our marriage is being thrown at me. My wife is so negative and angry towards me and is going back in the past.
Is she doing any add back therapy?
I would go to a licensed counselor and get out your feelings. Its tough seeing a loved one suffer but with the state my wife is in now I cannot risk getting in trouble with the law if she goes off the handle.
Posted by Michael
My wife is on her second cycle of Lupron for endometriosis and life is horrendous. I have never seen her this angry and hateful towards me. I am trying to stay strong and positive. Can you give me any guidance? is it lupron?
Posted by Michael
My wife is on her second cycle of Lupron for endometriosis and life is horrendous. I have never seen her this angry and hateful towards me. I am trying to stay strong and positive. Can you give me any guidance? is it lupron?
Posted by Helen
I have had endo for years. I've had laproscoies, a hysterectomy but it had gone through to my bowel. Then they gave me Lupron Depot. I have gained kilos, have hyper ventilation syndrome and wicked panic attacks a year on AND I still have endo, lots of pain etc etc. Lupron is poison!
Posted by karla
read side effects on lupron long term...my friend at work was saying plse don't do it...let mother nature take its course...i'm so scared now...
Posted by Sara
I had endo, so 5 years ago my ob did a complete hysterectomy. Well now my daughter (17yrs old) has stage 2 endo. My same ob wants to put her on Lupron, however 3yrs ago she was diagnosed with ovarian cancer, had immature teratoma. I will not put her on this shot, not only will this cause more medical problems for her. But I do not agree with giving someone a shot when this is not a cure for endo. Here is another article to tread about Lipron is anyone is interested http://voices.yahoo.com/what-doctor-doesnt-tell-aboutlupron-depot-59981.html?cat=70. I know there has to be something else out there that will help, and I will be contacting her ob oncologist tomorrow to find out. Will keep everyone updated. Good luck from IL
Posted by Julie Lessa
WOW! I am so sorry to hear about everything you all have gone thru, but at the same time so happy, happy that I'm not as whacked out as I thought I was becoming. I was diagnosed with Aggressive Angiomyxoma, cancer, in May of 2012. May 15 I started with my Lupron Depot injections. I was taking them every three months for a little over a year. Since starting the Lupron shots I've had the hot flashes, restless nights, and mood swings that I was told were possible side effects. But since the Lupron was keeping my tumor from growing back, I was dealing with it. Starting in November of 2012, six months after starting Lupron, my back started KILLING me. I had about four or five MRIs, was treated with vicodin and narco, Lidoderm patches, numbing cream, acupuncture, physical therapy, even just had a sacroiliac injection done less than two weeks ago. Pain in my hip started about 7 months in to the Lupron injections. It was pain so bad I was crying constantly. The pain radiated around my hip into my groin. Both sides. My side was on FIRE a different time. Docs said I had neuropathy from nerves being pinched in my back. Had that MRI'd, nothing.
I went back to my oncologist last week. She told me I was going to stop taking the Lupron. Said studies didn't show it actually worked for shrinking the tumor like they once thought it did.
Now I read everything you guys have gone thru. Every single doctor's appt I've had over the last year due to back pain, hip pain, "neuropathy" sounds like it was all due to this drug I thought was saving my life. I sure hope I don't have anything happen in the future due to this stupid shot.
Do not get the Lupron shot.
I'm due to get it again on the 2nd of August. I'm obviously not. Was there any side effects you all experienced from going OFF the drug? Not looking forward to those!!
Posted by Vicki
Hi readers, I've been reading all of your comments. I too, have become a victim of the Lupron shot. I was recently diagnosed with having arthritis all over my bones. I started having the bone pain about 7 months ago. I've been seeing a rheumatologist trying to figure out how to help the pain. I recently started a facebook page for those of us who are suffering from the Lupron. It's called Lupron Victims Ceccoli. feel free to friend me on it, so we can help each other out.
Posted by Maddie
after reading all of these posts, I am only sorry I didn't find it before my first Lupron shot. I have been on Lupron for a total of about 1 year and stopped because I recently lost my insurance. (Thank GOD for that!) I mean the pain in my hips is unbearable!!!!!! I can't sit, walk, lay down.... I had preciously taken Lupron for about a month because my husband and I went through an IVF procedure (10lb baby boy!) and mentioned it to my GYN doctor because of the stated 6 month lifetime use. She mentioned that there were no serious side affects from taking Lupron long term, that she had patients who were on the regimen for well over two years... During my last shot visit I was skeptical in taking the shot, but she said the only other alternative was a hysterectomy to which the thought made me cringe! I have gone to the doctors and have been diagnosed with Fibromyalgia and I told him he was full of it...Does he even know the amount of pain that I experience to brush it off as yet another diagnosis? It is appalling. I also went to the cardiologist as I was born with PFO (congenital heart disease) for shortness of breath and palpitations and asked him if he thought that stopping the Lupron would help, and he said, there was no correlation..... NO CORRELATION my foot!!!!
While on this shot I took care of a 4 1/2 year old son, my ailing mother, worked full-time, handled the house, and finished my bachelors....I thought I was exhausted from all of these things, but after reading all of these things my horror has been realized!!!! And, by the sound of it, there is nothing that I can do.......
I am just going back to college this September to obtain my MPH (masters in public health) and it sickens me to think that I could start feeling worse....What can we do? Maddieg67@Yahoo.Com. Feel free to e-mail with suggestions.
Posted by Diane Champion
I had a six month round of Lupron for excessive bleeding due to fibroids. I had an UAE shortly after. It has been over fifteen years now and I still suffer from those shots. I am on thyroid meds, heart meds, and blood pressure meds. I had none of these problems prior to Lupron. My hips hurt so much sometimes I can't stand for very long. They hurt right where I got the shots. Lupron might put someone into menopause but it just makes you have no feelings about anything at all. It is just like you have a don't care attitude. I contribute it to the breakup of my 30 year marriage. I wish I had done some research but I just did what the doctor told me to do and now I am here with all this physical pain and alone.
Posted by connie
I've been a Lupron victim since 1998. I currently take about 5 maintenance drugs that I hope aren't slowly killing me as I've gained so much weight from them and not being able to exercise. I've pretty much lost hope of ever finding good medical help. I have one nightmare story after another re:the wonderful medical est. and it's just gets worse. we live in a beautiful part of the country and I can't enjoy it because of this disability....I feel sometimes that my life is virtually over. I am 56. I cherish the memories of wellness and youth. DOES ANYONE OUT THERE KNOW OF A DOCTOR WHO CAN HELP US????? I will travel anywhere to someone who will listen and help me. god bless and thanks, connie
Posted by TeresaR
I dont' know how this can be something "new" and suddenly so bad. I took lupron injections in 1992, not because I had endo, and expected it to permanently remove the pain, but because I had the surgery, then the lupron, with the hope that after the 2 I would successfully become pregnant. It was unsuccessful, but doesn't mean it was dangerous.
Lupron put me in a "drug induced case of menopause". For 6 months I went thru the treatments. It was never, EVER touted as a permanent cure to endometriosis. While doctors may be telling you "I didn't know that", it's their own fault, not the maker's. This drug has been around more than 20 years, and I know for a fact I was told the following:
1. It's temporary.
2. Take it no more than for 6 months.
3. This is the only time you should take it, though it can be taken 2X in your life (2 6 month treatments).
4. It will put you in temporary peri-menopause, including hotflashes, etc, that actually comes with that condition. It means irritability. It means hot flashes. It means everything else that comes with that.
As for a study of 100 people, don't know who did that or when, but this drug has treated probably millions of people by now, in it's 20 years + on the market. If doctors are not using it for it's true purpose, that is the doctor's fault not the drug company!
Posted by Colleen
I recently had a laparoscopy and endometriosis was found. I also have an enlarged uterus. The Dr. Wasn't able to get rid of all of it because it would've caused too much bleeding. She is recommending the lupron to see if pain is decreased and if it is, wants to remove the uterus. Also, my uterus is retroflexed. Possibly the cause of years of back pain. Had back surgery 4 months ago and no relief. I am not finding any positive reports about Lupron and am not feeling good about going through with it.
Posted by Elisha Wheeler
Please pass this onto your congressman/congress woman
Posted by Jenny
There really is good informationa available from doctors and women/doctors on the net. I was losing so much blood I would be exhausted and in bed for two weeks. I emergency they would tell me it was probably menopause, and finally a gyn advised a hysterectomy. The doctor really didn't give me any info or explain anything. From the net, and my reading includes studies from hospitals, heavy bleeding and pelvic pain/stomach pain can be due to fibroids but hysterectomy is not the only option and drugs are definitely a bad idea. So far uterine artey embolization seems to be the best option and is not new but is not offered because doctors get more money from a hysterectomy.
Diet is major. Johanna Budwigs diet guide is very helpful and I have controlled the bleeding by following the program. Last week I slacked off after months and consumed sugar and the bleeding started more heavily again. To me, fibroids are a warning that stress, diet or something else has thrown our bodies off balance. This is why removing body parts does not reduce our chances of getting cancer. Most other sites repeat pretty much but not as fully the advice given in Budwig's anti-cancer diet. But her program explains exactly why we are going through everything.
Posted by Donna Brandenburg
To anyone who reads this, PLEASE do not get those injections. I have had 5 surgeries due to endometriosis. I trusted my doctor who convinced me those shots would prolong a hysterectomy at 23. I was to have 1 injection every month for 6 months. Worse mistake of my life. First one, I lost my job due to headaches so bad I couldn't stand light or sound. Being a migraine sufferer from a drunk driver running me over, I assumed it would eventually go away. So I allowed one more injection. Again worse mistake I made. Second injection caused heart palpitations, as well as a mitral valve prolapse. I've had chest pain that my heart specialist can't explain. I now see 5 different specialist. I have epilepsy that started out of nowhere. Sadly my doctors think its from being ran over. Yes that drunk ran over my head. That also happened when I 2, seizures started at 28. All my bones pop, crack, and I can't begin to explain the pain. My seizures are extreme. Twice a week its hard to move after I have them. As for bone density, I am uninsured, that makes it harder to see the doctors I need. Everything is out of pocket. Something else every one of you should be aware of, my teeth were perfect when I had the shots. Now my teeth are breaking non-stop. I only have 5 teeth that so far are not broken yet. Don't ruin your life. For those thinking of putting your kids on this, listen to us adults. Don't hurt them permanently like us.
Posted by Debbie
My daughter was put on this because of early onset puberty. We have had 3 shots and the mood swings are outrageous. After each shot, she has gotten a "stomach flu". When I put a timeline of the illness with the injection, I called the Dr. who told me these are not side effects of the injection. So much is still not known about this medicine and feel that my daughter shouldn't get the shot anymore. We will deal with early puberty and the fact that she will stop growing early due to advanced bone age. Wish Dr.'s and drug companies were honest about what kind of damage this drug can do.
Posted by Regina
The drug Lupron is a very dangerous drug. In 2006 to 2007, I had a few shots of this drug. My regimen was every 3 months.
My first shot, I started to have blurred visions, heart palpatations, lower back pain, burning of my joints in the knee area. I called my doctor and explained to her the problems I was having.
She replied by saying that the drug Lupron would not caused these symptoms, I said to her that I didnt have any of these symptoms until I had this shot. I think every individual know his or her body. Nevertheless she is the doctor, so I just over look these symptoms and took the second shot after 3 months.
Now at this point, I have all the same symptoms from the first shot to now having memory loss. At the time I was 41, my daughter who was 19 said that I act like a old women. She didnt understand the seriousness of the drug. My daughther thought the situation was funny until I told her I believe that Lupron was causing me all these problems.
I told numerous doctors my theory about this drug, only to be brushed off and said that its all in my mind, I even called a couple of attornies who said that if I dont have any proof of my claims there is no lawsuit. Now 7 years later I happen to be watching the Erin Brockovich movie which aired Sunday April 7, 2013 for the first time and decided to look her up and read her story.
Once on her site she stated that she was taking emails about the drug Lupron. There seem to be complaints about the side effects of this drug. How ironic was that. This drug causes serious harm to people, and in this article you have Dr. John L. Gueriguian who was a medical officer for the FDA in 2008 saying not to use the drug LUPRON.
That should be a RED FLAG. Its time for the Manufactuer Abbott Labs to pay for all the harm that has been done to people who have taken this drug. I believe in KARMA, I also believe this company knew of the long term side effects of this drug.
I hope every person who was affected by this drug take a stand and not let them get away with this because too many lives have been destroyed and people have died. Since I've had those injections my life has not been the same. People who have had those injections have all the same symptoms, its not a coincidence. The main symptom seem to be Degenerative Bone Disease, and that is very painful.
Posted by Tammy
Am so Thankful that i found this page.. l've been through so much the last 3 yrs..
A simple procedure has turned into repeat surgeries.. 2011 i had laproscopic surgery for endometrial ablation done.. Exactly a year later i had a laproscopic surgery to remove large Cyst removed from my left ovary, and they were unable to remove my tubes due to scar tissue.. 72 hrs later The HELL l call life, is how i now know it..
Gut wrenching pelvic pain, through the front and completely out through my lower back.. l had every test, Diverticulitis, Crohn's ,blood work, blood work, blood work, all organ's checked, 2 colonoscopy's done, MRI's done, CT scans done, Ambulance Rides, several trips to the ER, resulting in being treated like l was a Drug Junkie..! All Dr's said " Ruling out possibilities" And still no answer as to WHAT THE SEVERE CHRONIC PELVIC PAIN is..
Now being an educated woman, l know that internet can and can't be a source of information. Well let me tell ya something.. l have read more articles from women, who suffer the exact same hurdles i have been through. Some articles are like a text book print out of everything i have been through. And now having been to the BEST woman's hospital in Ontario, Canada..
It was brought to my attention that the endometriosis, wasn't resolved after the hysterectomy surgery. And women with severe chronic endometrisosis still suffered. Some mentioned that they did get some relief for a few months after the surgery. Only to have the excruciating pelvic pain return. And the OB/GYN had no answer or cause the female anatomy had been removed.
But scar tissue still remained.
Lupron is now the medication they want me to try. Reason to enure that the pain is uterus/ovary related and not scar tissue. Understandable thrust into menopause with give them that answer, stop female cycle and see if the pain stops. lf pain continues evidently the anatomy isn't the problem.
NOW i do my digging and my research, and am POSITIVELY TERRIFIED to try this medication. Cancer is in my genetics (paternal grandma) and Heart Disease even closer ( mom and dad ).. And my mother developed it after taking HRT... And then 1 yr later had blood clots and heart attacks and heart bypass surgery..
I am beyond depressed, stressed and sickened with worry over this.. My employer is understanding to a degree, as all my absences are validated though medical support.. But for how long, will they accept that, And the thoughts of Lupron being the only medication available to help.. SICKENS me even more. l do have friends who have taken it and said its the best thing they ever did.. and some who said it wasn't.. l'm only 41 yrs old, and have a 9 yr old at home. Just the 2 of us, is it worth the risk, As she's already seen me go through so much...
Posted by Jessica Alcantara
I am so happy I came to read all of your post. I am sorry for everyone missing the best of our lives due to how we trust our Doctors in telling us what is good or my help us. But as I read your stories they all explain the same symptoms. OMG I was going to get my 1st shot in the am. Thank God I have wanted to read about the side affects . Now I just think just do Hysterectomy and call it a day.Now I understand why some Religious groups just say. "All in God's hand" Cause my heart go's out to all who suffer.
Posted by Rocshelle Jackson
I suppose to get my first Lupron shot tomorrow, after reading all this I just don't know my fibroids is the size of being 27 weeks pregant,I suppose to get them for three months to shrink the fibriod before my hyst, I really just don't know cry for help.
Posted by Lizzy
I was suffering from lower abdominal pain for two years staring in 2006 and had normal paps and regular check ups. In 2007 I began having pain during intercourse and it got progressively worse. In 2008 I finally had so much pain that my husband became extremely concerned and I wanted to have a baby so I made an appointment to see an infertility specialist GYN who diagnosed me with fibroid tumors. I was told Lupron Depo would shrink my fibroids before a myomectomy, and I would be able to avoid a historectomy, and get pregnant after the surgery. The GYN did tell me that the plan was to shrink the fibroids by inducing menopause for a few months, and would come in for a monthly shot. I was given Lupron Depo shot for six months and was ready for surgery, at the GYN being preped for surgery, she asked me if there was anything I was concerned about, and I felt silly but I said, well I have been sitting up to sleep because my throat hurts and I can't breathe when I lay down because I snore a lot lately. She then did an examination of my neck and found a large goiter, my thyroid was huge and I was immediately sent for blood tests for thyroid and my surgery was canceled immediately since I was to have surgery the next morning. My GYN explained that with this problem, there was no way that I would come out of the anesthesia. I was re scheduled and came back a week later and we discussed postponing the myomectomy for another couple of months or so, in this case she recomended that I continue the Lupron Depo injections for two more months (for a total of eight months) while we wait for me to see an endocrinologist, which I was rushed in to see almost immediately, I was diagnosed with Graves disease, and I received a phone call from my primary physician stating that I needed to sit down and asked me if there was a pharmacy near by that I had to go pick up this new medication for my heart because I was in severe risk of a heart attack. I panicked, and I did what I was asked immediately calling my employer and explaining the situation. My employer was already alarmed due to the fact that my doctor's office had been trying to locate me that morning in an urgent manner. I fought the thought of having my thiroid ablated with radioactive iodine (RI) and for six months went to a couple of natural healers, who did examine my blood and gave me supplements and so forth, however nothing was working and one of these healers said to me that it may take up to two years for my thyroid to go back to normal. I was not about to live in this condition for another two years so I made aconcious choice to schedule the RI treatment and did that thru my endocrinologist. It has been four years. I saw my GYN infertilyty specialist after the RI for a check up because I was having lower abdominal pain again and she said that I had a couple of very small fibroids and that because I sarted having normal periods and not taking birth control pills, it was normal for new fibroids to grow. She urged me to get pregnant and have my child or just forget about it because of my age, and said that as soon as I get pregnant the estrogen will feed the fibroids and they will grow along with the fetus and at the same rate or faster. It will likely be a difficult pregnancy and in bed for most of it if I decided to have a baby at that time, I should do it right away. I tried to get pregnant but failed, due in large because of the pain with intercourse and I had bleeding at times again.
I have went to hell and back and finally my life has felt somewhat normal now and then. I have lost all touch with my husband sexually, I have become someone I do not recognize sometimes when it comes to my mental health, I have contemplated suicide and become severely depressed and moody at times. There are also some good times and I have had lots of jobs but I have not been able to hod down a full time employment because I have bone pain and body aches, I still have not full control of my bladder. I turned forty six a couple of months ago and I sometimes feel like I am eighty and can not get out of bed, but my body aches so much laying there as well. My right leg feels like it's heavy and falling off all of the time and I have been told I have degenerative bone disease and that it is normal to have this. I am on thyroid hormone replacement therapy for life, and sometimes I can not afford the health insurance which I need for obvious reasons but mostly because I need blood test for the thyroid every year. I want to contact a lawyer, I wonder if anyone has done that and if there is a class action lawsuit for Lupron Depo victims. I just found out that my GYN has retired and only sees fertility patients once a month so I can not see her any more. I want to scream, and I cry but none of it helps. If someone could please comment I will come and read often as I can. My fear now is that the Lupron may have caused some type of cancer. I have pain and bleeding and my periods have become abnormal. I called to see an obgyn and they said it's probably just pre-menopause, but I suspect otherwise and would like to have some tests done but not sure what tests. I am currently researching online to see if there is a way to check for cancer linked to Lupron injections. Any thoughs or comments are welcome.
thanks in advance. Lizzy
Posted by Jerry Kessler
My psa was high so my family doc referred me to a urologist who told me i had prostate cancer. He gave me the choice of starting treatment immed or waiting to see if it progessed. I of course opted to start immed. He started injections of a toxic chemical which i found out later was lupron altho he didnt tell me at the time. Soon i began to feel terrible. My legs ached, i had hot sweats, i lost all the hair off my torso, my back ached. When i complained to my urologist he said that lupron was not the cause and scheduled me for prostate surgery. When i told him i would be glad to be through with the lupron shots he told me that the shots would have to continue for another year after surgery "to prevent a recurrance" altho at no time have i had any symptoms of p.c. , no pain. I decided i wanted no more of lupron so i decided to get a second opinion from a respected urologist who told me that my type of p.c. required no treatment. He took me off the lupron and i began to feel better immediately. Urologist # 1 had been injecting me for l.5 years and charging Medicare $1,600 every three months.I reported this apparent fraud and malpractice to the FDA , the Medicare fraud unit and my state medical assoc. Result: nothing.
Posted by Pam
I was very close to taking this drug and am extremely thankful I didn't. I was diagnosed with endometriosis on my colon and was in horrible, horrible pain. I did some research and opted to go to a specialist that would perform excision surgery of the endometriosis. Other doctors wanted to leave it on my organs and have the medicine "shrink" the lesions, or burn the lesions, which results in scar tissue. Even though my insurance wouldn't pay for it and I went into debt, it was the best decision. It's terrible that the insurance will pay for this drug, but not for the procedure to get rid of the disease.
I am so sorry for those who trusted our system and had this drug. I pray you find some relief.
Posted by latasha
I was started on Lupron in June 2011 and had 1 shot each month until Dec 2011. My gyne suspected I had endo based on my symptoms. I was desperate to be pain free and was optimistic despite being told I would be thrust into menopause. Within the first 10 days i was experiencing hot flashes. I missed my cycle the 2nd month but by the 3rd i was having terrible pain and heavy bleeding that continued for the apprx 6 cycles. My migraines increased in frequency and my left leg was numb abd stayed numb for apprx 7 months after my last injection. I suffered joint pain, dryness, horrible mood swings and insomnia. I was prescribed prempro which helped somewhat. In May 2012, I was diagnosed with hyperthyroidism and recently graves disease. I read that Lupron could be the culprit snd my eye doctor agrees although the 3 gynes ive seen do not think thats possible. I did have endo removed in October 2012 but have not had any relief. I had Mireina fitted but the pain and bleeding were intolerable and had it removed early dec. I have since been told i have a small fibroid on my ovary. Lupron is a nasty drug that created (possibly) my life long thyroid battle and didnt help the endo...dont take it...please..does anyone know of anyone who ended up with thyroid issues after Lupron? This drug needs to be taken off the market!
Posted by Erin
My doctor did a laparascopy and found and that I had endrometrosis adhesions. I was treated with the Lupron injection within that year for 6 months and I have had issues with my health since. Before giving me the medication, she only explained the side effects as simple menopausal symptoms which would end after 6 months when the therapy was complete. Well, to my dismay, I began to exhibit severe migraines (10-15 suicide migraines a month), anxiety, bad mood swings, depression, vitamin d deficiency, sever bone and joint pain in my back, arms, legs, knees, and hips that worsened to the point that my boyfriend would have to help me out of bed in the morning, and out of the car. I had maintained a 2 ½ year weight loss prior to receiving the injection but ended up gaining every pound back years later, even though I had not changed my eating habits or my daily activities. Now 7 years later, at the age of 27, I’m getting residual hot flashes back to top it off. I stay tired and exhausted all the time and have insomnia. Grrr….
I wish I was better informed of the long term effects of this medication. Investigations need to occur as to why these side effects are not being explained to patients. Someone needs to once and for all take a serious look into this drug and file a national class action lawsuit on behalf of all of us who have been victims of Lupron.
Posted by Dep
I am 18 years old. I started getting lupron injections once a month at age 6 and continued recieveng them once a month for four or five years. I am having side affects that have progressively gotten much worse. I do not remember a day where I have not been in pain. I have days where I feel like I am an 80+ year old person and I literally cannot move. I have missed so much school and am currently attendance failing many classes. For as long as I can remember, whenever I complain about my pain, I am told to stop complaining and told that I am a young person, shouldn't be in any type of pain.... But I am... And hve been forever. I have major depression and anxiety problems, severe joint pain, convulsions, uncontrollable muscle spasms, headaches.... Migraines.... It is literally hell and my poor mother thought she was bettering my future by getting me theses injections once a month for precocious puberty. She was told their were no long term side affects ... Obviously the endocrinologist was very wrong. I feel horrible for my mother... She feels awful about this and the other night when we finally realized these long term side affects from Lupron, she said she couldn't stand this... She started balling her eyes out. I am not sure what to do.... She said a lawsuit willl probably come of all of this... Honestly I just want to be pain free... I don't care if it is even just for an hour... I have never known no pain.... And it sucks!!!! In top of that, the injection was originally given to me also to prevent cancer (precocious puberty causes release of estrogen in females sooner than normal.... ) the longer estrogen is in the body, the more likely the cancer risk is.... And then we come to realize that lupron has increased m risk higher than it would hve been even before?! Help, please :( :/
Posted by brandi Hanson
my bones and memory were affected. it hurts to walk. i feel like 60 but i am only 32. it did not phase the endometriosis growth. only did permanent damage to my body that i will have to live with thwarting rest of my life.
Posted by Heidi
OMG! All these years of people telling me I was crazy, that a medicine could not cause the problems and permenant neuro/muscular issues I am suffering through. EVERY doctor I talked to, would not listen. All said no medication would do that except for the OB/GYN who when he found out I was on it for the second time (long term shots) ordered me not to take it again. (I had gone to see him for a second opinion) That was in 1999. This finally gives me hope for vindication! I am now on permanent disability (a 2yr fight won in 2011) because of muscle seizures, rigidity and spasm/shakes and pain. I will never be able to drive again because the medications I am on now to control these issues, and if I'm not on the medications I will still not be able to drive. LADIES DO YOUR RESEARCH BEFORE EVER TAKING ANY MEDICATIONS FOR YOURSELF OR GIVING THEM TO YOUR CHILDREN. I did not. What I was going through when they put me on Lupron compares to the common cold in relation to what I am going through now because of Lupron. Heidi
Posted by Jeanette
I gave my daughter Lupron Depot for almost 4 years approx. 48 shots!! OMG, NO ONE told me about the LONG TERM side effects!!! My poor Baby, what have I done to her!!! She has severe bone pain through out her whole body, numbness, tingling, rapid weight gain acne, severe migraines, Polycystic Ovary!! Everyday I wakeup wondering what NEW symptoms will arise for her!! SHAME ON THE DOCTORS, for trying to convince me me that if I didn't keep doing the shots she would be "abnormally short stature"!! They wanted her to stay on the drug until she was 12years old. We started at 5 years old!! I took her off myself at 9 years because she had gained 50lbs in LESS than 2 years time.Also the drug co. manufactures the depot kit for Pediatric use and the needle that comes with the kit is approx. 2"'s long!! That would almost go through a 5 yr. olds thigh!! I thankfully knew to put a much smaller needle tip on the shot instead. PLEASE SOMEBODY HELP MY CHILD!!!
Posted by Leahhs9
I begin to have Lupron injected in my body in August because I had a hysterectomy back in 2008. I have been suffering in pain for years thinking that it was me ovulating. The pain came and lasted for 2 weeks and I would be painless for 3 week. I went to the county clinic and that's we're I was seen by an gyn doctor who had nothing much to say. She scheduled me another appointment to come see her when I was in pain. I did and associated with the pain was a few cysts in my left side. Which was suppose to be scar tissue and hemotomia I said no because the hemotomia would have desolved by now. So then the Lupron came about. I have had 2 3 months injections with no pain however I have experienced numbness in my left arm, nausea, really bad hot flash all through the day, increased headaches, very moody, my appetite has increased big time. I gain 4 lbs in 4 weeks. I told the doctor and she asked do u want to be in pain or gain weight? I wish I would have read this information before my last shot. There will be no more for me I am done with this injection.
Posted by lacreia white
Hi Im lacreia white and I take lupron note knowing the side effect which was not told to me I am having cofusion joint pain now degenarative joint disease gained 30 pounds in a lot of pain I am depressed even already have hypertention was regulated now its higher im misserable legs hurt and spas at night.
Posted by Maryse Jean-Louis
I was a victim of Lupron and I'm a nurse please visit my blog to read my story. Thanks
The T: No T No Shade: Lupron For The Treatment of Endomet... http://thet-mjlouis.blogspot.com/2012/11/no-t-no-shade-lupron-for-treatment-of.html?spref=tw
Posted by Marta
My 7 year old daughter is showings signs of early puberty so her doctor suggested that she takes Lupron injections but after reading all this comments I am terrified, I mean what should I do? can I get some advice please, I really do not want her to hit puberty at her age but what else can we do.
Posted by Lori Kotok-Anderson
I'm reading these comments and I thought for a second that I had written them! I had started Lupron Depot injections in Feb of 1996 for endometriosis and heavy bleeding. First, second, third...calling the doctor feeling that I was going to die--could not get out of bed, ached head to toe, was told it was necessary to continue it would get better. Had 5/6 injections 3 right hip and 2 left hip and decided that was enough. Was fired from my Management position due to my calling in sick---and the "story goes. Here is the interesting part----Have been having severe hip pain, well over 7 years.
Went to a orthopedic surgeon in 2005 and was told it was bursitis--and was sent to physical therapy. That did nothing. Feeling pain everyday, yet not knowing what to do I lived with it. Then again in 2010 knowing that something is not right went back to the orthopedic surgeon and was went to have and MRI. Finding a 17cm subcondrial cyst is it is defined and was told there is nothing we can do about it. To cut this "BOOK" short, went for a third opinion now in 2012, fould a wonderfual Dr. that actually listens, and he tells me that I have one of the largest subcondrial cysts he has ever seen, as did the radiologist. He described to me that the subcondrial cyst is actually a hole in the hip bone and then fills with fluids. The lightbulb went off--Realizing that the lupron has been known to breakdown bone mass. I know that the Lupron has been the cause of all my pain over these last 15 years and yet, no one wants to talk about it! My gynocologist said that there would be no affect!!!! I had spoken to an attorney about Lupron and since my injections and the law suit that had been settled, I exceeded the statue of limitations and the only was he would take my case is if I had cancer that resulted from these injections!!!! Now who is the real criminal! SAD..................
Posted by Rebecca
I received my first and LAST Lupron injection about 3 weeks ago. Never again will I ever get one. Since then I have developed hypoglycemia, hypotension, dizziness, fainting, frequent vomiting, back pain, hot flashes from hell, and migranes from hell. There hasn't been a day that I have not had a headache to some degree. I landed myself in the er due to the hypoglycemia and vomiting I was severally dehydrated. I may end up back there before the weekend is done. This is not a good helpful drug. I was told this was a good way to help keep the endometriosis at bay for a while. To me this has been nothing but a nightmare. I wouldn't wish this on anyone not even my worse enemy.
What I want to know is why all of these people including men are having such severe side effects and yet the FDA has not stepped up took this drug off the market. This is insane. I will never go back to that doctor again. I will never recieve another injection like that again. She should have done the hysterectomy and been done with it.
If the company has already said we lied and made up most of the research then why hasn't it been taken off the market?! It's all about the money to these people. Not the lives they are making completely miserable and more than likely for longer than we take this poison. And that is exactly what this is. POISON.
Posted by Lee
I was given a month injection of lupron to make sure i was not going to suffer side effects at the end of the first month i than proceeded to take the 3 month injection which would put me into menopause and shrink my enlarged uterus and fibroids for hysterectomy surgery. After taking the 3 month injection i started feeling out of sorts tingling of my spine while asleep heated so bad in my body which i never experience to this degree...i than started having paranoia and my thought process and making full sentences was a chore to say the least. I was discharged from my career because i could not function on the job and my character to my collegues had radically changed. After being let go from my job i suffered even more severe reactions associated to paranoia and anxiety as i never experienced before...i was scared for my life!!!! i just wanted to end this roller coaster i was on and without current medical coverage i felt like the end was near!!! not to mention the joint pain and leg numbness due to circulation shutdown from lupron. This is a dangerous poisonous drug that we patients have had to suffer at the mercy of this drug company and the FDA who turns a blind eye in the name of profits and billions being made on our behalf....the side effects have been by far the worst i had to endure and i don't wish this on worst enemy...something needs to done and fast...i can only wonder how many woman ended up in mental institutions for temporary insanity from the effects of this nasty drug!!!! i wish i never took this hormone to alleviate heavy uterine bleeding from a blood transfusion so i could shrink my fibroids to have laproscopic surgery....what a journey this has been hell and back!!!
Posted by Ed C..
To Casey (Feb 17, 2012) My wife and step-daughter had/have the same problems. My strong suggestion is to visit with an ENDOCRINOLOGIST before you go any further. My wife did Lupron with horrid effects (didn't help the endometriosis). Don't undergo a hystorectomy unless there is no other medical alternative. With PCOS, my step-daughter is on birth control (restores hormone levels, controls endometrosis, and reduces/control cyst growth/formation) and Glumetsa (reduces testoterone and helps correct A1C and Triglyceride levels) . But, see your Medical practitioner before anything else, particularly an Endocrinologist. Always get a second opinion. A niece, also with PCOS, gave birth to a fine healthy daughter last year.
Posted by christina
I just want to let everyone know that if you are getting lupron shots for endometriosis, it is pointless. Lupron is nothing but a bandaid & on top of that it will cause other medical conditions. This medication only puts endo at bay for a while. It is not a cure.
And best of luck
Posted by Diamond
This is so sad that Abbott is still raking in billions when Lupron has done irreparable damage to untold millions. I am wondering if the folks that claim it is a miracle drug would like an injection of that poison? I wonder if this is Abbott or some quack doctor that just wants to line his greedy pockets more that lies and say they have experienced positive results from this poison just to make another sale.
I say give it a couple of years and you will be googling Lupron like the rest of its SURVIVORS!!! This was meant as a last option for prostrate cancer patients, so why is it being forced on healthy women and girls? Also, I wonder how these doctors that took a vow to protect us sleep at night?? Is $1200.00 per shot worth my life turning into a living nightmare? What if somebody injected you or your children with this evil juice?
God said, VENGENGE IS MINE; I WILL REPAY. I will wait on the Lord and not look to man for answers. I simply post just to save on more human from a life of irreversible suffering!
Where is the FDA???? Why hasn't this poison been banned before now.
Posted by Britany
I have had two surgeries for endometreosis, I had a follow up today to consider having a third due to the severe pain I am in. My dr. recommended the Lupron treatment and after reading all this i am scared to even consider it. I am 23 years old and would like to have children in the future. Should I just consider continuing pain management or another surgery over this!?
Posted by Ashley
I am 25 years old I was told I had endometriosis when I was 24. I had severe pain for 2 years before any doctor said anything about endometriosis. They tried everything with hysterectomy being the last option due to my age. I was just fine with a hysterectomy its what I wanted. I was forced to take Lupron before they would give me a hysterectomy. I am bipolar and it was a biiiiig mistake!!!. I had my hysterectomy in December of 2011 and am already feeling better from my normal pains. About a month into the 3.75 Lupron shots I had horrible hot flashes, headaches, loss of words, and weakness in my legs. I told the doctors over and over again and they kept dismissing everything I said. In the beginning I was told if I was having any side effects I could stop at anytime. Noooo!!! They wouldn't let me I did 5 months before I walked out of their office during the visit because they wouldn't listen and just wanted me to have another shot. I had the started the shot if I'm not mistaken in June or July of 2011 and I am now having horrible pain in my lower back and right legs every once in awhile it goes into my left leg. I also have severe headaches and yes still hot flashes!!! yuck, the worst thing ever. I'm too young for this!!! I just had a lower bilateral nerve conduction test (youch!!!) and am waiting for the results. We will go from there but my doctor believes it was caused by the lupron. I strongly suggest not taking this drug from my bad experiences. Good luck!!! I hope that will help someone.
Posted by Kristen
My daughter was 15 when we were told that Lupron would be her best option for her Endometriosis. She had horrible side effects, such as nausea, migraines, depression, liver problems, hot flashes, hair loss and more. After her 4th shot, she lost bladder control and passed out. We needed to call the paramedics, and she was admitted to the hospital for 3 days! During that time, her heart rate and blood pressure were all over the place! She had almost every severe side effect listed on a drug website that we looked at after her admittance to the hospital. This drug is dangerous and should be removed!!!!!!!
Posted by Robin
I took Lupron Depot injections. I was told by my ob/gyn, it was in the hopes of throwing me into menopause. I am 49. I have several fibroids, one is approx. 2 in thats the biggest one.And if thrown into menopause the fibroids wouldn't grow anymore. Before I started I did go to a seminar at local hospital to get alittle more educated on the drug.The doctor there told me Lupron is not a treatment for fibroids. But I was assured by my ob/gyn that is was less evasive to try the shots instead of opting on hysterectomy. I have had 6 injections,last one was Feb 3rd, can't tell you if I have been "thrown" into menopause yet. Have had spotting over last week. time will tell. My issue is unexplained pains and stiffness over the last 3 months.. at first I wrote it off as I worked out and twisted something, just to make me feel better. The strange thing is there are days I feel great and the next day I feel awful, tired, aches and pains..I have considered being tested for Lyme disease. Something made me search more on this drug..And the symptoms people are writing about, its not in my head or in theirs. My worry is how long will this last? Is the pain going to always be with me? I wake up in the night with the pain so bad at my neck and bottom of head I can't move..Now I'm thinking should of gotten a second opinion and probably should of had surgery, recovery from that would of been better than feeling like I'm old. Before/during the shots I was working out with excercise tape and treadmill as least 4 times a week and horseback riding once to twice a week. This week only been on treadmill once, the fatigue is overwhelming.
Posted by Gineen
I took Lupron 5 years ago for infertility. If I remember correctly I was on a 15 day course because my ex husbands urologist was out of town and they had to keep me suppressed for my IVF/ICSI cycle.
I have given birth to a healthy daughter from that round, but 5 years later from using it, I am 31 and having some problems a 31 year old shouldn't be having. Doctors have been chalking my symptoms up to stress, but when I was researching my symptoms, a few pages about long term side effects of Lupron came up.
My hair is falling out, I have sever insomnia, I have mood swings I never really had prior to Lupron, I do workout pretty hard but I injure myself a lot and my recovery time is long from each work-out. I recently starts getting headaches something I never had.
I am seeing my family practitioner this friday and my OB/GYN next friday. I wonder if this is something I should really be considering. I have been under extreme stress for years now and I figure my body should have a handle on it by now. But despite my changes, they won't go away,
I hope I can find answers.
Posted by Kme
I'm just into 3 months of lupron. The first few weeks were hell! Nausea, joint and body pain, headaches, tired all the time, slight hair loss, and now more occational hott flashes. The symptoms had subsided. I've been taking extra liquid calcium to help my bones. No alcohol and eating very healthy helps. I'm still tried a lot and have slight mood swings. I'm only 26 and hope to have a least one child in my future so I don't want a hysterectomy right now :(
Posted by Bonnie
I had my first injection last week and I feel like hell. I feel worst. my body aches, vision is blurred, loss appetite, tired, eyes hurt, stomach aches, short tempered. I have not wanted to exercise since the injection. I do not like the way I feel. I may cancel my next appointment.
Posted by CASEY
i am 20 years old they want to give me the lupron 3.75 shot for 6 months it is being offered to me to help treat my endometriosis they told me since i had endometriosis and pcos that i would never get pregnant and i was wondering should i have this shot or should i just have a hysterectomy done either way i am just 20 and have been suffering for a very long time i just don't know what to do please help me
Posted by t slayton
I have taken my first injection three months ago and its very worrysome.The next day my urine was bloody i was told this was cancer cells comeng out of me ,i dont Know cause im not educated in the medical field.I have hot flashes every hour on the hour at night and just one or two when im up during the day,my heart rate increases really fast when i lay down,i have had heart pains ever since i took the shot,i have had a bad pain in my hip where i got the shot from day one,leg and feet pain,cramps,light headaces that i have never had my whole life,feet swelling,big appatite,nausea almost to the point of vomiting before meals,loss of hair,shortness of breath,
that i never had before the shot ,loss of words making me think longer before answering,extream tiredness,loss of all sexual desire,shrinking of the testicules by half of there size to start with,rash's,blurrd vision,sometimes feel like im going to pass out that scares me to drive,i cant get a good nights sleep anymore for burning up at night with no fever my temperture is allwaya 98.6, I was told my psa was 315 now it is 1,it has made it where i can urinate without being in so mutch pain after being diagnosed with stage 3 prostate cancer,i am a 54 year old industrial mechanic that isnt a happy camper when you look at the side effects of lupron and told to keep trying to work 12 hours a day 6 to 7 days a week for the govermant while feeling this way!
Posted by Irv Mesher
I am presently on Lupron therapy for recurrent Prostate Cancer. My PSA dropped in three months from 30.03 down to .07.
Posted by Nichole
I would like to find out if Lupron causes the following problems? Disc degeneration, nerve problems, joint/bone pain and severe migraines? I was given this drug from 2006-2008 and read this should not have been given to me for more than six injections is that true? My migraines started around the last month of treatment and I never had them before. I had several trips to ER because of these migraines and now I just woke up one morning with a hurniated disc for no reason at all I've never had any injury. I also have been diagnosed with brachial neuritis at the same time which is where my upper left arm just went numb and left it partially paralyzed from shoulder to elbow simply from pulling up my pants. I heard a pop in my shoulder and that was it. I'm 34 years old; I don't drink or smoke and I feel like I'm 70. I have headaches all the time that start in the base of my scull. I lost my job recenlty over all of this and I have some serious anxiety now because I believe this drug is slowly killing me. I just found out also that this is a cancer killing drug so what is it doing to my insides? I don't have cancer!! Where can I find experts on the long term effects of this drug?
Posted by Susan
I was given two 7500 mcl shots of lupron, one month apart to shrink my fibroid before myomectomy. I was not told anything about lupron before the injections, except that I would be thrown into a temporary menopause. A day after the first shot I literally fell to the ground when a wave of heat swept over me and I nearly fainted. So began my experience of the 'hot flashes from hell'.
Prior to surgery, my speech and thought process slowed (little strokes?), I had trouble finding words, I suffered severe bone pain, headaches and depression. Although these symptoms went away months after the surgery, less than one year after the injections, I developed chronic neck pain, and a shaking neck - at 48! I thus look like an old woman; have osteopenia and some neuropathy. Waiting for the other shoe to drop, so to speak. I wish I had had a hysterectomy and never taken Lupron!
Posted by Angie
I cannot agree more with Dr. John L. Gueriguian conclusions regarding Lupron Depot injections. I myself am a victim of the side effects and when I further researched the clinical studies via Abbott, I found a case study of approximently 100 people is NOT sufficient. In addition, woman have a higher tendency to be ignored of side effects, as most doctors or sales representatives of this company push it off as being "hormonal" rather than actual symptoms of a medical condition.
The Corporate Office of these companies should be held to their ethicial standards to ensure when they produce and market a drug that all data is accurate and available to patient. The FDA should be conducting a re-audit of the validation and clinical research data and compliants that have been filed since the release of this medication.
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