I found this at the RSDSA.Org website, and can't wait to find out what the results will be.

http://www.rsdsa.org/3/research/clin..._progress.html

Janet

Thanks, Janet,

Yes, interesting - wouldn't it be wonderful if they found something that really worked!

It's amazing where they're finding these new painkillers. This stuff, Neurotropin, "an extract from the inflamed skin of vaccinia virus-inoculated rabbits, has been observed clinically to be effective for treating pain in patients with lumbago, SMON and other neuropathies". Rabbits!

I'm waiting for them to come up with a pill form of Prialt - cone snail venom!
http://news.bbc.co.uk/1/hi/health/5165124.stm
You can only get it in an intrathecal pump, at present, both in the US and the UK. I don't know why, but I have a feeling these cone snails may be the key to something big. (My feelings are usually way off, though)
All the best!

Good morning Artist,

It would be wonderful it they found something that worked. I really wish they would hurry up and come up with something to cure RSD..I know I am a dreamer, but hey if you're going to dream why not dream big? LOL

You know back in 2000, I believe, the pain management Dr I was using then talked to me about some type of venom that was used to treat pain, and was administered using the pump. I was wondering whatever happened to that because I have not heard it mentioned in years. Hey this would be a good one for Vicc.. You know back then on the old, old, board there was discussions on the treatment using the venom, but it has been so long ago that girlfriend I couldn't tell you what it was all about if I was offered a million dollars..LOL

Rabbits? You know I think I'll go rent me a bunny costume and let them use me to try the treatment on and then I'll let you know if it works.. They would think they had found a rabbit that had been given a huge abundance of growth hormones..LOL

Have a good one..

Love,
Janet

I was going to do this study- Talked to the doctor in NY but decided against it. My pm told me he was participating in it a while back and there were too many side effects- but who knows= the drug is thalidimide which was used in the 60s by pregnant women and caused birth defects... But who knows maybe my doc is wrong

Debbie

Debbie,

Now that you mention it I do remember the birth defects that this drug caused and if I remember right they pulled it due to the number of birth defects. I wonder what side effects it has had doing this clinical trial? It will be interesting to see the results when they are finished..

Why is it that if you do find a drug that helps or does work for some things it has so many side effects that it just isn't worth taking it? That's like the cholesterol meds that I can't take because of bad muscle pain but my cholesterol really needs to be lowered as soon as possible, but I could barely walk due to the pain in my legs.. Just can't win..

Hugs,
Janet

Hmm, yes, if you google it, the potential side-effects of lenalidomide are as long as your arm, and much more scary. Very scary. And, on top of that, as a chemical relative of thalidomide, it also has the same risks to an unborn foetus.

So it strikes me that this is a drug with very specific potential benefits e.g. for bone cancer, but not one to be used off-label *at all*. On the other hand, full body or very severe RSD might fall into the on-label use, I suppose that's why they're doing the trial.

I'm far too much of a coward to be tempted to try it, even if I was more affected by RSD than I am - so far I've been very lucky and the RSD has confined itself to my left wrist and hand - might be a different story otherwise, though.....
all the best

i know of 2 people who have been involved in testing this drug.....there was someone on the old board who participated in a thalidomide study and had wonderful results from it, and i think the lenalomide is so close chemically that they're hoping for similar results....the odd thing about using it, is that thalidomide can actually CAUSE nerve damage, but still seems effective for neuropathic pain.

the lenalomide would, i think, not be part of the ongoing legal issues affecting the use of thalidomide (some of the cases involving affected children have yet to be settled) and i would guess that the company is hoping to make some money on the new version to help offset the horrendous legal costs they've been facing.

these drugs r fairly effective at slowing tumor progression....they inhibit cell splitting (which accounts for the birth defects).....the dicovery of neuropthic pain effect happened when they were treating a cancer patient who also had rsd.

i also knew of this from a person in an e-mail group that i joined years ago (the group has now disbanded)....when she used thalidomide she also had terrific results...it reduced her pain to minimal levels......her problem with it was simple.....when the study ended, she couldn't afford the pills.....her insurance company, of course, refused to pay, because of the 'experimental/investigational" loophole......the meds would have come to over $1,000 a month......that was thalidomide, and i have no idea if lenalomide would be equally prohibitive.

the people who participated in the study had to sign a long, complex agreement agreeing that they understood the risk of birth defect, agreeing to keep the medication out of the reach of children (duh!), agreeing NOT to get pregnant for, i think, at least a year, and waiving all legal action...it was far more restrictive than most drug study contracts.....so yes, i think we all have reason to be a bit spooked by the idea of using this drug.

but it's interesting, isn't it?