"Byetta is my Dirty Little Secret"

Although Deborah has not suffered acute pancreatitis from taking Byetta, she is concerned about long-term damage. Deborah was prescribed this drug off-label to lose weight but didn't know about Byetta pancreatitis until recently. And she is concerned about her health record. "I don't want Byetta on my health insurance profile because of its link with pancreatitis; it may become difficult to get reasonable insurance later on," Deborah explains.

"Deborah (not her real name pending a lawsuit) started to gain weight in 2005 after she had a hysterectomy. "Then I lost several family members and within a period of 5 years, I think heavy stress contributed to the onset of metabolic syndrome (pre-diabetes)," she says. "I gained about 50 lbs and despite exercising vigorously and sticking to a strict diet, I was unable to lose the weight that I gained. Then I met an osteopathic physician who specialized in treating bariatric patients (gastric bypass is a bariatric procedure).

"I started treatment with this doctor. First he did a blood-glucose test that determined I was pre-diabetic. He put me on a calorie-restricted diet and over a period of six months, I lost 24 lbs. but I gradually put it back on again. After several failed attempts to curve weight gain, he brought Byetta to my attention; he said it was being used in the treatment of diabetes and another doctor had recommended it as an off-label use to assist in weight loss. I decided to try it but 30 days later, nothing changed. In fact I was putting weight back on.

After 90 days I told him that Byetta was having no impact on me so I discontinued it. I am now within 5 lbs of my original weight when I first saw this doctor. My concern is that--although I did not suffer pancreatitis--I want to know if there is any damage that I am unaware of.

Being prescribed this drug off-label has also discouraged me from physicians in general. I have become skeptical and it has really shaken my confidence in the medical profession. In my opinion I was prescribed a very strong hormone-influencing pharmaceutical that did not produce the effect it was supposed to. So what did it do? I believe that when you ingest a drug, it has some kind of effect on your body; otherwise why would you take it? Byetta and its link to pancreatitis has left me with a scary question mark.

I am very cognizant of what I eat and I have been following my diet to the book. Does this diet make me gain weight? I am now 169 lbs and I am only eating 1200-1400 calories per day which means I should be 120 lbs. Based on the formula of 10 calories per lb per day, I should be back to my original weight.

When the news hit recently about Byetta pancreatitis and that it caused 6 fatalities, I was terrified. While I have not had symptoms, I wonder how my pancreas may have been compromised –that I don't yet know about. I am still pre-diabetes; I don't test myself regularly but my glucose monitor indicates that I am always within range—I am very careful.

I stopped taking Byetta two years ago but I don't know if there is any long-term damage because I haven't gone to the physician for further testing."

Deborah explains that she hasn't seen her doctor about Byetta because she doesn't want it recorded on her health insurance profile. "I purchase my own health insurance and once you have diagnoses on record, it becomes difficult to get reasonable health insurance," she explains. "On top of wondering if I am OK, I have to keep Byetta like a dirty little secret--it's like being between a rock and a hard place. And I know the pitfalls—I used to sell health insurance."

"Byetta is my Dirty Little Secret"

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