Reno, CONGRATULATIONS!!!
Borzoi, don't you love good thunderstorms?
Shaina, off to go look at your thread next!
Ali, sending a hug your way, I hope you are feeling better soon.
Hi to everyone else!!
Just a small update on my situation. I went in and spoke with the research coordinator at my Diabetes center on Tuesday about their Trials. The one I am looking at joining is currently ending Phase II of trials(where they find the perfect dose for the drug). The doctor thinks he found the exact dose needed, which is what I will receive. They will also use the same dose for Phase III of the study.
This same trial is being done at 5 other places around the world.
I have 20 pages of documents they went through..all about the drug. It is called TRX4 and it is in the same drug class as Orthoclone, the drug people receive after an organ transplantation. They believe TRX4 is safer because it does not affect the entire immune systerm, it only attacks and kills the anti-bodies which are attacking my Beta cells(what produce insulin).
The doctor estimates I should be producing 36 units of insulin, but I am only producing 28 units...so I have lost 12% of my Beta cells so far. If I don't try this drug, I will continue to lose 35% of my Beta cells every year, and will be completely insulin dependent in about three years(sometimes faster, sometimes slower).
The idea of TRX4 is to preserve my remaining Beta cells so I am not as dependent on artificial insulin. This will also lower the risks of serious lows(coma's etc.), and of future complications(kidney failure, heart issues, blindness etc) because it will help keep my bloodsugar in a safe zone.
If I decide to be part of the trial I will need to be physically evaluated first(ECG, bloodtests etc) and if I pass I can join.
There are a few negatives with it. You do have to be in the hospital(8 days total) while they give you the meds through I.V. infusions, and it does cause you to feel sick. Apparently, they want you to experiance flu-like symptoms because it tells them it is working. They treat you for everything though, hence the hospital stay.
There are some 'in theory' risks involving cancer in the future and allergic reactions. The trial doctor does not believe right now that this medication can cause cancer, but they have to mention it because they don't know yet.
This drug is proving to be
very promising, they are having fantastic results with new onset patients and/or early diagnosed patients(they are needing very little insulin, and are staying in great BS ranges). The key is to take it the moment you start your honeymoon to stop the decline in Beta cells. Apparently, two very large drug companies put millions of dollars into it 6 months ago, which is all great signs. The drug really does sound like it is doing wonders.
I am on the fence about doing it. Yes, keeping what remaining cells I have left will be a great help(much easier to regulate bloodsugar, will not need as much artificial insulin), and I would love to be able to have that happen...however, it is still a new drug, and they don't know
everything about it. Diabetes management is at the point where risks and complications are really declining, anyway.
I am getting mixed responses from people on it. Some say go for it, others don't.
I had a few more questions about it, and I am waiting for the Doctor to answer them. His answers will probably be the deciding factors.
Well sorry for the ramble. I just wish this drug was not in the testing phase. If I don't get it now, it will be too late in the next few years once it is approved....then again, what if I take it and there are things that show up 20 years down the road. I give myself a headache
If interested, Tolerx the drug company funding this trial had this press release last month:
http://www.tolerrx.com/index.php?page=prdetail&id=124
...I got all the time in the world
