Clinical trials

[Rubyslipper]

I don't know if this is where I should post about this or not. But here goes. Have any of you participated in clinical trials for RLS? If so, how was it, was it worth it, what are the pros and cons?

[Mprtrm]

I seriously thought about it.I decided against it,because I might get a placebo with no other medication and any serious complication would not be covered.( I don't think there would be,but my life is important to me and there is always a slight chance.)

[Rubyslipper]

Thanks so much for responding, I thought maybe no one was interested in the subject. I still am not sure what I will do, the trials don't start for awhile. But I have three daughters that I am so afraid will develop RLS (since it can be hereditary). So I may go for it. The worst part is weekly trips to a town 1 1/2 hrs away for 12-13 weeks. That is the killer part. Anyway, thanks for the input.

[ViewsAskew]

Ruby, I've participated in other trials, but not for RLS. Chicago does not seem to have and RLS trials, so guess I'll not get into one . But, I might if it were available. Sometimes the trials are NOT double-blind with a placebo. That's the only way I could do it. Most of us are not going to give up our meds completely and take the chance that what we'll take won't have any effect. I'd rather slit my wrists!

Ann

[Rubyslipper]

Ann, thanks for writing back. I don't know too much at this point about the trials other than they are going to have them and I asked for more information when they do. You've been having a time of it lately, haven't you? I see your smile and hear your joking manner everytime I see your posts. I really enjoyed meeting you. I hope things are looking up for you, let us know what we can do to help. Guess I'll make my final decision about the trials when they call me back. I also have to see about getting off from work. The office manager will work with me but I don't think the boss will. So it may not matter anyway. Sleep well.

[becat]

Hi to you all,
Ruby, the truth is, I'm a huge Chicken. I've been asked to be apart of two studies, but refused. There is Baylor Hospital very near by and it's an awesome teaching hospital.
My own doctor did a study within several months of my starting to see him. I just couldn't get past the thought of living without what little that helped at the time.
I wasn't so scared about the side effects of a new medication. I might be now that I know a bit more. I was scared about how I would react to living in a constant state of pain, if the medication did not work.
With saying that, I must say that at the time I might have been better off trying the study. As you know it took the better part of two years to truely get relief. I simple was not brave enough.
I guess I could try one now, but I suffer the same fears.......do I feel strong enough to go backward for the good of many? I'm still not too sure about that one.
I know that someone has to try the new stuff. Have I stick to licking envelopes and stirring up trouble for now? LOL
I'm interested to know if you do and how it goes. You've made me brave before, I can see it happening again.
Hugs to ya.

[Rubyslipper]

Aww, Becat, I'm not brave. Just can't stand the thought of my "babies" going through what the rest of us are. My big concern is for my daughters, always and always. Doesn't make me too smart sometimes, but I'm very protective (over-protective?) of them. They are all smart and independent but that doesn't keep me from worrying, just like you with your family. Do you know how your support lifts me up? Not just you but all of you. I can't imagine life without my friends here. I would have gone round the bend without anyone to help row me back. Thanks to you all.