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"Stevens Johnson Syndrome Almost Killed My Daughter"

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Wenatchee, WA"My 16-year-old daughter, Chelsea, was prescribed Lamictal to control her mood swings," says Shelly. "We were told she might get a slight rash but no one told us she would wind up in ICU with Stevens Johnson Syndrome (SJS ), which led to [Toxic Epidermal Necrolysis TEN." When Chelsea finally recovered, Shelly was told that TEN has a 70 percent mortality rate. "If I knew that sooner, I'd be in hospital too."

Chelsea Before SJSShelly is also on Lamictal; she has been taking it for 5 years with no side effects. And in those 5 years she never read on the label anything about SJS; however the drug's label does list in its side effects a rash. It also says that "Lamotrigine (common name) should not be taken by people who are allergic to lamotrigine or any ingredients of the medication." But people like Chelsea find out they are allergic by taking the drug!

"By the time Chelsea was up to 100mg of Lamictal per day—about 4 weeks on the drug—she developed a slight rash on her chest," says Shelly. "Her pediatrician looked at it and advised Benadryl for the itching. The next day we were back to the doctor—it had spread all over her chest and her lips were swollen and blistered. But he just gave her more Benadryl. He also did some research while we were in the office and diagnosed Stevens Johnson Syndrome or SJS, and blamed the Lamicatal. 'SJS has a 40 percent mortality rate so if she stops breathing, take her to ER,' he said. And if we didn't make it to ER in time?

Sure enough, next morning Chelsea couldn't breathe through her mouth and just slightly through her nose. We rushed her to ER where she had a nebulizer treatment.

We were in this hospital for 6 days; the rash and blisters were over her entire body, inside in her mouth and down her throat. Every day the SJS was getting worse. She was given morphine and Atavan and Tylenol for a fever of 104.

Chelsea After SJSAnd another girl at the hospital had SJS—it isn't that rare.

After 6 days an infectious disease doctor looked at her and demanded she get air-lifted to the burn unit at Harborview Medical Center in Seattle. We wanted to go there at first…If it wasn't for him, Chelsea would be dead. She had TEN—a much more severe reaction.

Within 15 minutes upon arrival, she was in surgery. They shaved her head and got all the blisters off; she had a pig skin graft from waist to face, the top of her head and part of her arms. When Chelsea came out of surgery they took her up to ICU. Luckily she didn't need to be intubated. She was in Harborview for just over 2 weeks.

She never complained, even though this happened 5 days into her summer holiday. Chelsea will have a great story to tell when she goes back to school. She got home July 7th and now the pig skin has sloughed off; she is healing. However, her skin will be discoloured—blotchy white and brown—for about a year; her fingernails are falling off, she has muscle and joint pain and insomnia. When Chelsea was prescribed a drug for insomnia I called Harborview: We are terrified of taking anything unless Harborview approves.

I want a formal apology from this drug company. And they must be held accountable, to educate both the public and the medical community. At first I was in shock when Chelsea's pediatrician told me she had SJS. Then I was furious; we were never told that SJS was a possible side effect. I want this drug company to get a black box warning; we shouldn't have to ask, we should be informed about any side effects."

Scroll down the Lamictal website, where it says the following:

LAMICTAL may cause a serious skin rash that may cause you to be hospitalized or to stop LAMICTAL; it may rarely cause death. There is no way to tell if a mild rash will develop into a more serious reaction. These serious skin reactions are more likely to happen when you begin taking LAMICTAL, within the first 2-8 weeks of treatment. But it can happen in people who have taken LAMICTAL for any period of time. Children between 2 to 16 years of age have a higher chance of getting this serious skin reaction while taking LAMICTAL.

Shelly wants to know why this warning never reached her family.

READ ABOUT SJS LAWSUITS

READER COMMENTS

Posted by

on
I am 75 years old and 37 years post op a brain anuerysm. I took all known antiseizure meds which gave me a rash every time . Finally on Keppra with no problems. I was living in Michigan and moved to Texas. Neurology here stopped Keppra and started Lamactil. Rash and discontinued after 6 weeks. Fiery pain and itchy ever since. Now developing blisters and blood blisters on back and chest. Quit this doctor and all meds she has me on. Seeing a dermatologist Monday. I am sorry for each one of you with problems. Godspeed.

Posted by

on
I've taken Lamotrigine/Lamictal for 5 years with no side effects. It is a wonderful medication for bipolar disorder, depression, anxiety and has shown promise in treating ADHD. SJ syndrome is a rare but serious side effect that can be caused by many, many drugs (although Lamotrigine does carry a higher risk, especially when not taken correctly). I would not let that possibility discourage you from taking this medication.

Posted by

on
I was taking lamictal for 6 weeks, after a month, I had sore throat than runny nose, sneezing, body aches. Flu like symptoms. I was doing some research and find out that flu symptoms is the beginning of SJS than little rash on chest, some twitching in thighs and eye, cough which will not go away. I stop lamictal right away, was on 75mg. I hope nothing bad happens after I stop meds.

Posted by

on
I found this page because of the multiple cases of TENS I have seen in my burn unit this past year. Right now we have a young man fighting for his life. I would suggest to those of you experiencing a mild rash to stop taking it immediately and know where your nearest burn center is for evaluation. Most ERs and primary MDs don't recognize it until it is very advanced.

Posted by

on
Horrible, itchy rash that will not go away. I have been to the ER, Primary Care, and Dermatologists.
This medication is poison...I was only taking 25mg.
I can't sleep or function with this itchy rash all over my body...
It has been debilitating over Christmas, New Years, and two weeks of the new year.
I can't continue like this. No medication helps.

Posted by

on
Do not take this medication. I have had the worst allergic reaction to this medication. First fiery, itchy rash on my upper chest that spread over my body like wildfire and I was on a low dose 50mg. I have stopped this medication and will never take it again, parts of my body are now dis colored, and it looks as if I was set on fire. I have been on antihistamines for a day or so around the clock and finally feeling some let up. Skin is drying out and I'm using coconut oil to help my healing process *Do not take this medication*

Posted by

on
I had no trouble with lamotrigine (50 mg). Last night after my second or third day taking the prescribed 1oo mg I got a mild rash on my chest. After all these comments I had enough. I am going to quit "while the going is good" - at least not painful and only a little itchy - with about 6 spots in various places on my chest area. THANK YOU all for writing. You may have saved my life!

Posted by

on
Our 19 year old ,nonverbal Autistic boy needed to be evaluated by a local psychiatrist in the phoenix area, in order to be able to attend school and other local services. (we recently moved to AZ) We took him to the specialist and we also addressed the fact that his obsessive behavior was becoming an issue along with his rapid mood swings, the physician suggested lamotrigine to his current medications. By the second visit he was okey to get this medication increased, from 100 mg. to 200 mg. And in within days , I started noticing the rash, first around his shoulders and over night he started itching around his neck and forehead, two days later we ended up in the ER. My husband and I agreed in taking him off the medication and call the Dr. immediately.As the other people I'm reading about he is sent home with steroids, antibiotics and itch medicine over the counter. Day after the hospital I notice the redness on his lips, almost burn-like, due to the severity of his Autism it's extremely challenging for us to determine how painful or uncomfortable this has been., I do know one thing, the itch has to be unbearable because he cannot fall asleep (even with his traditional medication use! ) so far we've had several sleepless nights, my husband and I take turns kinda. We are terrified after seeing all the pictures and the possibility of him developing something even worse, please we need all the help or advise based on your experience with your loved ones. We feel horrified that our innocent child has to go through so much already! just to top it off with something that we trusted the experts to prescribe him, just to cause him pain.

Posted by

on
My daughter in 2013 also was very sick with Steven Johnson.after taking lamictal for one week . Was admitted to the hospital every one claiming she had chicken pox after 5 days of seeing my daughter burn in front of my eyes and having doctors say it was everything but Steven Johnson I could only pray. seeing my girl go through such horrible pain and no one knowing what was wrong like they never heard of such disease. When finally they realized that she had Steven Johnson she was sent to the burn unit . Almost lost her life.
No one seems to know about Steven Johnson it must be shared to the public .

Posted by

on
My sister died September 28, 2014, after suffering since April because of this drug. She was first sent home 3 times before finally being sent to the Augusta burn center. She lost all of her skin and ended up on a ventilator then a trach. She suffered ups and downs unthl her organs began to shut down. NOONE should take this drug. This reaction, whether rare or not, is devastating. The risks outway the benefits. My sister only took this drug for 2 weeks and only found out about the risks after googling, even though her doctors knew she had multiple allergies. My sister is gone be of the irresponsible drug companies and negligent doctors.

Posted by

on
I was fortunate and had a mild SJS but it was bad enough! I went all summer feeling like my skin was on fire, my eyes were blood red, blister in the mouth, genitals, ears, and throat. I thank God my skin did not blister as I have seen on other poor souls. My doctor asked me if I'd ever taken Lamictal or similar drugs then told me to watch for a rash. I didn't present a rash until after the blisters appeared! I had already stopped the Lamictal on my own by the time I was diagnosed with SJS. I didn't know what SJS was until I Googled it and felt compelled to inform others it doesn't always present in a text book manor. I continue to have skin and eye sensitivities which are being treated. I've been told the pain will eventually go away, they just don't know when. There is genetic testing available to tell them who is likely to get SJS from this drug. I believe such test should be offered with a full explanation of the danger of SJS BEFORE the drug is prescribed.

Posted by

on
This drug is lethal. After 1 week I had blisters under my arms.
The pharmastist said I had an allergy reaction and have me piriton. A few days later I was rushed to A&E rash from head to toe, couldn't breathe and temperature over 40. I got to A&E just as I stopped breathing and got rushed to resuss. I spent a few days in the hospital being pumped with adrenaline, steroids, antihistamines, painkillers and hooked up to heart monitors and oxygen tank. After a week of 24 hour care, I was feeling better and went back to work, only to have a secondary relapse and end up in hospital for a week with the life threatening rash. This time the rash was in my mouth, ears, genitals everywhere. Considering I hadn't taken lamotrogine for a week you can imagine my surprise when being rushed back into hospital. I can't describe how awful the last month has been. I still have marks on my legs and only starting to get colour back in my feet, but the relief of not feeling itchy is the best feeling in the world. Thanks to that drug I died once and nearly again. Have spent the best part of 3 weeks on hospital, lost my job, money, nearly my life and my family have had to go through it all. To make it worse the consultants at the hospitals hardly knew anything about the drug and the only reason we did get answers was because someone in dermatology knew what they were talking about. It's really worrying to know that psychiatrists prescribe this medication without even warning you of the side effects. This drug needs to be taken off the market.

Alexandra, 25

Posted by

on
I was given Lamictal in 2011 for a mood disorder. With in the first 48 hours I was in the ER with a whole body rash!! I got there soon enough to get steroids to prevent SJS and was not diagnosed with SJS.Yet I only to 1 or 2 pills and I dealt with this horrible rash all over my body for 6 WEEKS!! I HAVE MULTIPLE SCARS FROM THE RASH! THANK GOD I'm a RN and knew about SJS or else I wouldn't have went to the ER so quickly....and the end results could have been much worse than scars! LAMICTAL NEEDS TO BE REMOVED FROM THE MARKET, ALONG WITH OTHERS THAT CAUSE SJS! THE RISK DO NOT OUT WAY THE BENEFITS!!!
D.BOOTH RN(Inactive/disabled)

Posted by

on
My brother Paul is in the ICU burn unit at ECMC with SJS from that same horrible drug Lamictal. He is suffering so bad. He was prescribed this because he had a seizure while on his other epilepsy medicine Depakote. The doctor that prescribed this terrible drug should of known that the two don't mix and it increases the chances of getting SJS. I have never seen anything so horrible in my life. My poor brother should of never had this happen to him. We pray every day for him to get through this absolute hell. It's hard on all of us. This evil drug needs to be taken off the market permanently. We pray he makes it out of this alive. He is suffering like I have never seen a person suffer. We plan on suing for sure.

Posted by

on
My 5 year old granddaughter was recently started on Lamictal for seizure's. My daughter was warned that Lamictal can cause a serious rash but was told it was very rare. After just one week on it she developed a rash on her face. My daughter took her to the E.R. only to be sent home. The next day the rash covered her whole body except her head. She was admitted into the hospital and By the next day, she was pretty much stripped clean of her skin and is on a ventilator. She is still in the hospital and is listed in critical condition. This is so wrong. I know they said this rash is rare, but since my granddaughter was diagnosed with SJS I have looked into it more and it doesn't seem so rare. I'm not so sure that the benefits of this drug out way the risks. I believe they should take this and any drug that has this much of a risk off the market.

Posted by

on
My son 17 age took lamotrigine (lamictal) first 2 weeks. We took him to ER at Valley Medical Center in Renton, WA. Dr said stopped to take lamictal. Took two medicines for itch less and predisone and went home. Next day he has more rash and itch and feel like burn. I took him to ER again. 3 hrs later, Dr said transfer to Swedish hospital in Seattle. My son stayed overnight at Swedish Hospital. Dr said recommended to transfer to Harborview Hospital in Seattle. Harborview is best service for burn skin. He stayed at Harborview Hospital. Found out his white blood cell count was very low and transferred to ICU. Fed food tube through his nose to stomach for 3 days and bad swollen, burn and reddish rash and blisters. Till his white blood cell counts improved to 7.0 level and transferred to regular room for 6 days. he has been improving very slow. He didn't go to school for 3 weeks. I feel bad and unfair for him that he is young and innocent. The Lamictal effected bad side effects. Please help us to suit the medicine company. It is unsafe for young kids. My husband missed to work for a week cuz of our son in the hospital. I had been worrying everyday and overnight not good sleep plus I have multiple scelorsis dx.

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