Today I meet with Dr. Baker to discuss the results of my 72 hours of monitoring hell and debate the merits of Byetta (exenatide) in treating my recent onset Type 1 diabetes. In mice exenatide has increased the mass of B-Cells located in the pancreas improving their endogenous production of insulin; however trials in humans have been less conclusive. In addition to the preservation of beta cells exenatide delays the absorption of food and nutrients into the blood system similar to symilin. The side effects have been pretty severe though including massive weight loss, pancreatitis, increased hypoglycemia, nausea and diareah (sounds fun doesn't it!)
In order for Byetta to be an option for patients with Type 1 a glucose tolerance test must be performed. A couple weeks ago Dr. Baker had me down bottle after bottle of the homeless man version of McDonald's Orange Hi-C to find out if my body was still producing any insulin. Turns out I still have traces of C-Peptide in my blood when large amounts of glucose are consumed proving that I am still in the "honeymoon" phase of diabetes. This "honeymoon" phase is also the reason why I sometimes can't get my blood sugars high enough to work out, am able to enjoy pizza on occasion and encounter so many hypoglycemic moments - guess the only positive out of that is pizza.
According to Dr. Gitelman of UCSF ~
"It’s extremely important to conserve the endogenous insulin secretion that you still have during the honeymoon phase," Gitelman says. "Even when patients have to take insulin shots, if they can continue to make some of their own insulin, it’s much better for long-term outcomes. Those patients who continue to make their own insulin for longer periods of time have better blood sugar control, lower risk of hypoglycemia and lower risk for long-term complications. "It’s like the difference between riding a bike versus riding with training wheels. It’s very hard to fall over and do something wrong when some of your beta cells are functional."
So the question is will these training wheels help me or hurt me? I have alot of fears about introducing a new drug in my system when my main goal is conquering the Ironman; there's a good chance this drug could really interfere with that goal. Currently I only have 10% body fat so massive weight loss would be pretty unhealthy and if I am unable to absorb all the nutrients my body is ingesting workouts are going to be much less safe and my recovery will take much longer. While improving my body's natural production of insulin would be fantastic I'm not sure this is the best way to go about it. Some studies have suggested that intensive insulin therapy (i.e., pump therapy) also helps preserve insulin production in recent onset type 1 diabetics. Currently I believe my best course of action is to stay the course and not worry about a "miracle" drug - your thoughts?
6 comments:
Is this considered an off-label use of Byetta? Were those trials done in type 1 diabetics?
Anne - yes it would be off label use. Trials were done with Type 1s but full results aren't out yet.
I guess I would take a close look at how many people suffered side-effects, and if they were mild and temporary or more severe and long-lasting. And if you know (or could find out) who is doing the studies, I'd see if they might talk to you about preliminary results.
Personally? I would give it some consideration if I still had any beta cells, since some of the research into finding a cure may work better under that condition. If it were a true "miracle drug" and significantly helped preserve beta cells (in type 1), I think we would have heard a lot more buzz about it, though. Maybe not, though.
I would imagine the GI symptoms would subside over time but I hadn't heard about massive weight loss and pancreatitis. I knew it was associated with weight loss in type 2's which was usually not considered to be negative. But it sounds like this may be something different?
It sounds like a tough decision. I stopped taking symlin because I couldn't deal with the stress of worrying about low blood sugars (especially low blood sugars I couldn't correct). I had 2 of my worst low episodes in 19 years of diabetes on symlin. Of course, symlin is a different drug but they seem to have similar effects. (And some athletes use symlin successfully.)
Unfortunately, my knowledge of diabetes is quite limited. For as long as I can remember, my cousin has been a diabetic. I remember him having to take insulin shots, but I'm not sure if he still does.
I'm not sure how I feel about "miracle drugs". Our bodies react differently to different drugs and if the benefits outweigh the cost, perhaps that is enough reason to try. But Anne brings up great points about looking into the study further.
My brother had his pancreas rupture in HS and has had stomach issues ever since. It's not a fun situation and we are lucky he is alive. Definitely something to investigate more.
PS... Darden changed back to pending.
There are few studies to confirm the utility in the case of type 1, although I would note that several researchers at the University of Miami's Diabetes Research Institute have stated their intention to study this in clinical trials.
However, it sounds to me more like the drug reps are pushing the doc to do this because I can't really see much benefit to it. Symlin would be a better choice (as a hormone produced by the alpha cells found in the islets that are destroyed in T1DM). BTW, after 32 years w/ T1, I still have a fairly high C-peptide level, but I'm haven't seen that provide much benefit in terms of protection from hypoglycemia, so like anything, the results may vary considerably from one person to the next.
I suggest all you that are not familiar with Byetta,it's side effects(pancreatitis is nonsense)visit
Dr Joe Prendergast of the Endocrine Metabolic Medical Center (EMMC) site where hundreds of patients share their Byetta experiences.The recently released data on beta cell preservation by Amylin would also be a good step to become informed.not guessing on a very powerful drug
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