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leaann
04-23-2012, 03:04 PM
I was wondering if anyone ever tried a clinical trial for lupus, I was invited to try one that they are doing near me. They are sending me all the information on it and I have read all about it on line, still not sure if this is what I want to do or need to do. I keep thinking in the back of my head and I doing this because we can't afford the right medication I need or Am I doing this because it may help me. There is a lot of thinking that I have to do. Any input would be nice.

Mica
04-23-2012, 05:08 PM
Ive always wanted to get on one of those trials, i'm stuck in a place of constant fatigue and nausea. I was told that if it wasn't for my lack of insurance that they would of put me on the benlysta, I was super upset that my doctor suggested that after I lost my insurance because ever since they were doing trials for belysta I wanted to get on it. I personally would do it, but thats me. Talk to your doctor and look at all the information and results the critical trial has showed so far.

steve.b
04-23-2012, 07:38 PM
for a trial to get to the stage of human trials.....
it has already proven to work.
and to be within the safety guidelines.

i would consider any trial offered to me...
but i would also discuss it with my doctor.

tripLexie
04-24-2012, 07:56 AM
I agree with Steve. At this point, I think most of us are up for almost anything! Just talk to your doc.. And what is the trial!? I wanna do it haha!!

leaann
04-24-2012, 11:51 AM
this was something that has been discussed with my doctor, he was the one that got me into the reason I am considering it, well is the doctor and I were talking about doing an infusion medication, however I don't have any insurance and I had to stop going to the rheumy doctor cause it was costing me a ton of money that I don't have and I can't work and was denied disability again. So the doctor find this place that is a Rheumatology clinic that is doing a trial on infusion meds. It seems like the best way for me to go since I am stuck with no health care except the one great doctor that is having to learn about lupus as we go cause it is not his field and he is a clinic doctor.

I will say that this doctor has done a wonderful job so far and seems to do what he can to help me, even with giving me most of my meds very cheap for me since I am on a number of them. So he must know what he is thinking when we discussed this.

I have searched on line and saw that there are several clinical trials going on and I have studied up on them so I know what I am getting into. I think I am just nervous about it, that'a all.

Thanks for the comments and postings