When Byetta Fails
John Dodson is the poster boy for the Byetta revolution. The New York Times featured and photographed him in perhaps the most influential article ever about Byetta, Alex Berenson’s “A Ray of Hope for Diabetics,” in its March 2 issue.
That article reported that John had then lost almost 60 pounds since starting Byetta in June 2005. By the end of June 2006 he had lost 88 pounds.
Then in the middle of August, Byetta stopped working for weight loss. John was sure that his blood glucose would rise, but it didn’t. His A1C remained at 6.0 and his twice daily blood glucose tests ran then, as they do now, between 73 and 110.
But John’s appetite came roaring back. His weight returned with it. In the next three months he gained back 15 pounds.
“I couldn’t stop grazing,” John recalls. “One night I ate a whole quart of ice cream.”
Desperate, John tried everything that he and his endocrinologist could think of – Hoodia, Phentermine, and “even a couple of those preparations “guaranteed to help you lose weight” that they sell in health stores.
“I was getting depressed and couldn’t believe what was happening,” he recalls. “I was less effective and feeling pretty much a failure. There was nothing I did that was successful. I didn’t have any will power in the face of my enemy – my appetite.”
He stopped tracking his weight regularly. “I never get on the scales when I’m not losing weight,” John told me. “That is an unwritten law when you are gaining. We are great deniers – at least I am.”
Finally, on October 8, John says that he decided he “had to do something or die.”
“Isn’t that a bit extreme?” I asked him. “No, that’s how I felt,” John replied. “I’m dead if I go back to where I was, and I would not make it. I am still scared to death I am going to lose it all. Constant vigilance!”
Eventually, John figured out the way to get back on the weight loss track. Take more Byetta.
How did you think of that? I asked him. “It was because of a statement that Dr. Joe made,” John told me, “even though I didn’t realize the importance of it at the time.”
“Dr. Joe” is what we call Dr. J. Joseph Prendergast, a leading endocrinologist who directs the Endocrine Metabolic Medical Center in Redwood City, California. Early this year I reviewed his book, The Uncommon Doctor: Dr. Joe’s Rx for Managing Your Health on my website.
“Dr. Joe said that the best way to lose weight is to repeat the method that you were successful with before,” John continued. “As I drove back home from my appointment with him, I thought more about what he had said. The only thing that has ever been successful for me was Byetta. So, I should look to Byetta for the answer. And that’s when I decided to increase the Byetta dosage to four times a day.”
For a week John took two shots of 10 mcg of Byetta in the morning and two more shots at night. It was too much. At the end of the week he got violently ill.
So John cut back to three shots a day, sometimes varying it with just the usual two shots. If he doesn’t eat lunch, then he takes two shots at night before dinner.
“The danger zone for me is eating after dinner,” John says. “If I am eating after dinner, I know I am out of control.”
By October 26 John had lost half of the weight he gained back when he was out of control. His weight is now 80 pounds less than when he started to take Byetta on June 13, 2005.
“I am clearly on the path of losing weight again,” John concludes. “It feels so great! “When I am losing weight, I feel really successful. It makes me happy. I can hardly wait for each day to come, because I know that I am going to lose more weight.”
A few years ago John retired as a pastor, but now has a second career as a fund raiser for his church. He travels regularly for that work, and lives in Felton, California, near Santa Cruz.
John and I have been corresponding since January, when he wrote me about my blog article, "Stalking Byetta" . His encouragement for me to start taking Byetta even if I couldn’t work out insurance coverage did a lot to get me started on it a few days later.
Since that time John has been my role model. In mid October a consulting contract took me to Santa Cruz, and John graciously invited me to stay at his home for the three days I was there. We had a wonderful time together, swapping stories about Byetta and the rest of our lives, hiking our favorite trail, and eating (small meals) at local restaurants.
John decided on his own to increase his Bytta dose. But he gets solid support now from Dr. Joe and another endocrinologist.
Dr. Joe says that Amylin Pharmaceuticals, the company that developed Byetta, discouraged him from having his patients go on Byetta three times a day. “They said that based on their data that it wouldn’t help.”
So he left it there. But now, he thinks that trying three times a day might not be unreasonable for people who weight loss has stalled.
So far John is Dr. Joe’s only patient who is taking more than the usual two daily shots of Byetta. “But, emboldened by his success, I will do more,” Dr. Joe says.
He says that he has also had two or three patients who had weight to lose and were perfect candidates for Byetta. But from the first it didn’t work for them.
“At the time I never thought to recommend that they take Byetta three times a day,” he told me. “But now I would.”
Dr. Alan Rubin, an endocrinologist in San Francisco, also has a patient who successfully experimented with taking more than the standard two daily shots of Byetta. Dr. Rubin is the author of Diabetes for Dummies, which two years ago I reviewed in my “Diabetes Update” newsletter.
Dr. Rubin also has one of the best diabetes podcasts, which you can hear on his website or download to iTunes.
“One of my patients who was on the maximum dose of Byetta was not losing weight and not showing much improvement in blood sugar,” Dr. Rubin says on his Byetta Healthcast #44 of September 25, 2006. “On his own he increased his maximum nighttime dose above the 10 micrograms. He immediately began to lose weight. His blood sugar levels have become normal. He looks and feels much better than before. His hemoglobin A1C has fallen into the normal range.”
Based on that experience Dr. Rubin says he had another patient take two shots of Byetta before dinner. She too is now doing much better, he says. Consequently, Dr. Rubin discussed this approach with a scientist at Lilly, which markets Byetta together with Amylin.
“Although they recommend a maximum of 10 mcg twice daily,” Dr. Rubin concludes, “they too found that as the dose is raised, there is more weight loss. As a result of this I plan to increase the dose of Byetta in my patients who fail to lose much weight. As long as they can afford the cost of the medication, I will offer it to them.”
Anyone taking Byetta more than twice a day needs to be prepared to pay for it. I doubt if any health insurance plans will cover it, and Byetta is expensive. The best price that I have been able to find for a 10 mcg cartridge is $208.79 at Drugstore.com.
John has been on Byetta almost 17 months. That’s a lot longer than the nine months that I have used it. I am already thinking ahead that I may have to go to Byetta three times daily, in part because of research in The Journal of Austrian Family Physician that Dr. Joe just reported in his newsletter, “Weight, Weight Don’t Tell Me".
“All diets seem to work for about 12 months,” he reports, “but seem to cease working at the end of the 12 months.”
Byetta is, of course, not a diet. It’s much more than that. And so far, I am still losing weight. My blood glucose, blood pressure, and cholesterol levels are down, while my energy level is way up.
But I’m ready to change to three shots a day and pay whatever it costs, if I need to in order to control my weight. Like John, I know that getting this weight off is a matter of life or death.