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corwin
06-22-2006, 02:13 AM
Ok so I qualify for the diapep277 study. I will have an appointment with a doctor soon to get all the details and make a final decision if I want to join. This is a link I found about this new drug:
http://www.d4pro.com/IDM/site/DiaPep277vaccine.htm
It's the drug that cured mice but didn't work as well for humans. It did however show an improvement in the destruction of beta cell and prolonged the honeymoon for some patients. It's an improved version of the original drug that should hopefully work a bit better. There is a 50% chance I'll be in the control group so I'll gain nothing out of it. This will be meaningless for me so I'm more curious about actually getting the drug. It's a bit scary to have something so new and untested in my system and it's my primary concern as far as joining. I don't want to get the "oops we didn't know it kills patients in 2 years, sorry" :hmmmm:
This study also means more frequent visits to the hospital, more blood drawn and tests done. However it means better control and input from doctors on a regular basis. I'm pretty sure I'll do it, it makes me feel good to do my small part for diabetes research, but I'm still a bit worried having such a new untested drug in my system. It's 1 shot, very similar to insulin, every 3 months.
I'd love some comments from you guys. Will you do it if you had the chance? Do you know anything about this drug that I didn't discover yet?
I'm going to do a lot more research and I'll keep you posted. I like to know as much as possible before making big decisions like that.

duck
06-22-2006, 02:37 AM
After reading from the link you posted, AND if I didn't have kids, I'd do it.

Simon
06-22-2006, 05:56 AM
Perhaps if this had been developed 10 years earlier I wouldn't be on insulin now. If it works as a vaccine paerhaps my children should have it if I ever have any.

corwin
06-22-2006, 06:22 AM
The more I read about this the more convinced I am to give it a shot. It seems like it actually have potential to do what they claim. If you beleive the theory that the body keeps producing beta cells and the immune system keeps destroying it then it's a potential cure not just a vaccine. Even if it doesn't, it can still mean a 1 time transplant that will work in the body this time and not be destroyed. I'm talking years in the future of course but they have to start somewhere. I just really REALLY hope there aren't any bad side effects they didn't discover yet.

kidvid
06-22-2006, 07:46 AM
I'd join the study in a heartbeat. I've taken the approach that I want everything technology can offer - I'm doing everything I can possible do (diet, exercise, excessive recordkeeping and analysis) and I want everything technology can offer. I was on aggresive MDI from 2 weeks of dx, Symlin from 6 weeks of dx, and on a pump in 2 months. Perhaps unfortunately, I live far from any major hospital/university that may host any type of study - but I'd do it if I could. I wish you the very best if you participate - and even if you don't!

Good Luck

Joe

Littlebit63_99
06-22-2006, 08:28 AM
Seems to me, you have to give it a shot.

Good luck!!!!!!!!!!!!

BriOnH
06-22-2006, 02:53 PM
I sincerely apologize if this seems negative, but I would not do it. At best you reduce the amount of insulin you take, at worst, you screw up your system and / or die. If I am going to be a guinnea pig for a science experiement, I wouldn't do it for anything less than a sound cure. If you do do it though, and a cure stems from it, you will be helping millions apon millions of people, and for that, I thank you.

Ailsa
06-23-2006, 10:28 PM
It's a tough call. I think for me it would depend on the likely side effects. Of course what we all worry about the most are the side effects we're likely to get now!
I know some people who were in a trial using pig cells without antirejection drugs about 9 yrs ago. The government put the lid on follow up trials when Xenotransplants all looked scary to them, but everyone of the participants would like to have another go. None of them suffered any detrimental effects, & all of them seem to think they have some degree of lasting benefit.
I think they were all very brave, but none of them regets it.
Of course the big benefit is, that if it works, you won't have to wait years for it to become available to all, like everyone else will.
Good luck & please keep us informed.

corwin
06-25-2006, 12:58 AM
I met with the endo who is heading the research here in Israel. They pretty much agreed to anything I asked, being able to keep getting the drug when the study is over if I want, being allowed to quit at any time and few other smaller issues I was concerned about. I also did a lot more research about this drug and the whole mechanism that suppose to halt the progression of diabetes. If you ask me it really seems like a promising concept. I hope to get the real thing and not be a part of the controll group. 250 people already got the drug and none had any serious side effects so it helped put my mind at ease.

corwin
07-05-2006, 07:44 AM
The lab results came in today, everything is fine and I can start the study. Tomorrow I'll be getting the first shot (50% placebo) and have a strange test of eating milkshake and getting my blood drawn every 15 minutes to see how well my pancreas is handling the carbs.

They also tested my a1c again and it came back 5.4. Nice number to get, I knew I'm a bit obsessive with testing and corrections. I'll try to relax a bit.

I hope I won't be the one proving that this new drug has very bad side effects.

Brouts
07-05-2006, 08:06 AM
Corwin...good luck man, I envy you for doing this not only for your self but for millions of people. Thank you

BriOnH
07-05-2006, 11:48 AM
The lab results came in today, everything is fine and I can start the study. Tomorrow I'll be getting the first shot (50% placebo) and have a strange test of eating milkshake and getting my blood drawn every 15 minutes to see how well my pancreas is handling the carbs.

They also tested my a1c again and it came back 5.4. Nice number to get, I knew I'm a bit obsessive with testing and corrections. I'll try to relax a bit.

I hope I won't be the one proving that this new drug has very bad side effects.

Good luck Corwin!!! Seeing as how you got diabetes such a short time ago, I hope this eliminates shots for you. Please keep us updated! God bless.

corwin
07-06-2006, 05:35 AM
Thank you guys.

I had the annoying test, 6 times blood drawn from a needle that stays in my arm for 2 hours, the good news is that I drank 40 grams of carbs, in a controlled environment, with no insulin, and my bg was 127 after 2 hours. This was another verification that my pancreas is still doing a very decent job, very close to the non diabetic normal range according to my endo. Then I got the shot and there's not much to do other then wait for the next shot a month from now and another test to see how much insulin my body produces.

BriOnH
07-06-2006, 10:28 AM
What did the dr's tell you as far as what you could expect? Does this one shot, if it's not the placebo, start working and stays working for three months?

corwin
07-07-2006, 05:06 AM
They told me I might get a very mild flu like symptoms for 2-3 days, so far, 24 hours later, I didn't get any. I did get slightly sore in my arm where I got the shot. It feels a bit similar to a tetnus (sp?) shot, like I pulled a muscle, but it's very mild. The drug suppose to keep the immune system from attacking the beta cells for a while. I got this first shot, in a month I'll get the second one and 3 months after that I'll get the third. I don't remember what happens after that. What the doctors hope will happen is that my honeymoon will keep going, so they told me to expect my insulin requirments to stay around the 14-15 lantus and about 1:23 novo I'm taking now. However this sound very optimistic to me.