Notes from an Experiment

Testing life without incretins

IleneBy Ilene Raymond Rush

A few months ago I wrote about Bydureon and Byetta, and how despite the excellent effect both drugs have had on my A1C levels and weight (a good 12 pounds of permanent weight loss), I remained concerned about side effects from the drugs and the bright orange sticker affixed to the pages of the instruction booklet warning that it may be implicated in pancreatic cancer.

I now have an update. For now, I have stopped taking the drug. The moment of truth arrived at a conference on diabetes held at Thomas Jefferson University in Philadelphia in October. Attending as a reporter for the Philadelphia Inquirer, I was perched on a stool in the back of the audience of endocrinologists, nutritionists, and diabetes educators, taking notes and listening to Dr. Edwin A. M. Gale, emeritus professor of diabetic medicine at Southmead Hospital in Bristol, UK. I listened closely as Dr. Gale shared his thoughts on this class of drugs, known as incretins.

Incretins increase the amount of insulin released from beta cells after eating. They also slow the rate of absorption of nutrients into the blood stream and delay stomach emptying, which may contribute to weight loss. Dr. Gale talked about how these drugs may also cause long-term side effects, particularly in the pancreas, essentially enlarging it and perhaps putting it into a precancerous state. In addition, he noted, even when you stopped taking the drug, these changes could quite possibly continue.

From my place in the back of the hall, I looked up. I had known about the risks of the drug, but I guess I hadn't really heard a researcher of his stature express doubts. Needless to say, I was worried. And confused. So after the conference's morning schedule ended, I went up to Dr. Gale and posed a question: If he had a daughter who was taking one of the incretin drugs, what would be his advice?

Dr. Gale, a large, friendly looking man, didn't hesitate. "I'd tell her to quit," he said.

It was food for thought.

On the train home, I decided to call my endo. He called me right back, and we had a talk. I explained to him what I had heard, and he responded that he wasn't yet convinced that there was enough evidence to change the medical protocol. He said that he had read the medical literature, and found so far that the benefits of the drug outweighed the negative effects. That the things that Gale talked about, including the enlargement of the pancreas, might be a plus because it could possibly also increase the number of insulin producing beta cells.

By now, I was off the train and walking to my car. Quickly, I did the math — I had an appointment with my endocrinologist in January, when I would get my six-month A1C. I thought about my earlier hesitations about the drug and made an educated bargain with my doctor: What if I stopped taking the medication until January, and we'd see what the effect dropping the drug had on my numbers? I'd keep taking my Glucophage and Amryl, and stay on my low carb diet.

My endo agreed it was worth a shot.

So for now, I'm doing a little science experiment to see how my body responds without the drug. So far I've gained back a few pounds but my sugars seem pretty good. I don't recommend my route for everyone — it's a decision I made with the advice and consent of my health care team.

I'll let you know how it all works out.

Click here to read more of Ilene's Second Chances columns here.

Read Ilene's blog.

dLife's Viewpoints columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences, most often at a set point in time. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team before acting on anything you read here to find out what will work best for you.

Last Modified Date: February 11, 2014

All content on is created and reviewed in compliance with our editorial policy.

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