Drug Trials

[AndreaC]

Just got back form Vandy and I'm confused as ever! My doctor wantes me to participate in a study for OI, but she also changed my meds and is running extra test with my local doctor. She did give me a wheel chair, because I couldn't walk across the room without passing out and my legs and hand turning blue. Atleast I can get out of the house now. This is so frustrating. I thought goin to Vandy would give me answers, not more questions. They told me I will have to stay off my meds untill the study starts. I am so frustrated right now. I just want to feel better.

Has anyone here participated in a drug study before? I am curious as to what to expect?

[goldicedance]

I participated in the clinical trials for Midodrne (Pro-Amatine). I saved an empty bottle bcause I thought it was nifty with its label that it was a clinical trial drug.

Sometimes, the drug being tested for POTS is already on the market but being used for something else.

I am sure your doctors will be careful.

Lois

[Mrs. Burschman]

Just got back form Vandy and I'm confused as ever!

Argh! That's really frustrating. Especially the have-to-be-off-all-your-meds part.

I haven't ever taken part in a drug study. I never had any reason to, because Paxil was working so great for me. Not as great anymore! I'll be looking for something else to add or use instead. So let us know if you find something great!

Do you know if it's the type of study where you might get into the placebo group and not get any drug at all? That's what I'd worry about. I'd be sick as a dog. I can't function without meds.

Amy