[SandyS]

Hi all,

I was talking with a mom here on the board, her daughter is taking namenda for her RSD, has anyone else taken this med. I googled it and noticed that fmichael had a post back in 2007, but nothing since. So Mike are you still taking this? My Lindsay is in a flare right now. She has purple splotches all up her leg. She has had these before, but not up her leg, only on her calf and foot. We are headed to her PM on Friday and would like to discuss some options.

Thanks all,Sandy

[daylilyfan]

I have posted about it. Not sure how to look that up though.

I was on it perhaps 3 years ago? It helped then. Reduced pain, cleared my thinking. I worked up to 30 "units" not sure if it is in mg or what now...

I stopped taking it when the doc who prescribed it retired. Could not get a new doc to prescribe it.

When I started going to a PM at Clev. Clinic last summer, she prescribed it. She said it helps some people, and not others. No way to know until you try it.

So, I worked up to 30 (mg?) again. Was on it 6 weeks at that dose, and found no relief of pain or any help thinking. So stopped it.

But, my RSD is much worse now than it was back when it was helping me.

Good luck with it!

[AintSoBad]

I take 20 mg. @ bedtime. It helps w/ the burn a bit. It is an altzheimer's med, and it does clear your thinking a bit too. (I have a tbi).

Actually, Sandy, it's not a real big help.... but, if your doc can give you a sample, you might want to try it.. as Daylily said, its different for everyone.
Good Luck!

pete

[fmichael]

I agree with Pete. I take 30 mg./day (the maximum allowed dose) to help keep the head clear and it appears to have some value in that dept.

That said, I was advised six years ago by Dr. Schwartzman that the doses that were being considered by the FDA did not even begin to approach anything that would have a therapeutic effect on RSD. And indeed, the few posts and journal articles that have described any effect on pain have been deliberately coy on the dose issue. I went so far as pressing a guy a couple of years ago on the point, as well as how he got insurance coverage for anything above 30 mg/day, who told me he couldn't say anything so as not to jeopardize his supply source!

Mike

[Abbie]

I was on a trial run of Namenda several years ago... just as I was noticing that it was helping... I was taken off of it... I too was told the dosages allowed were far less than believe to be significantly effective for RSD.

I sure wish I could be a guinea pig for a higher dosage use of this....

Have nothing to lose and much to gain... if anyone ever hears of a trial going on let me know.


Abbie

[SandyS]

Hi Guys,

I forgot to bring the name of the drug to Lindsays pm...she could not think of what it was. But, she put her on Cymbalta and said if this doesnt work she wants to put in a SCS, but Lindsay is not going for it. She pushed the vitamins again. So I am going to order all of them and try with the cymbalta. Thanks for posting for this.

love you guys!
Sandy

[msdrea83]

i was put on a trial when i first got dx.... so like 6 years ago... i was on soooooooooo many other things at the time i didn't notice a difference... but like i said i was taking a handful of pills day and night then so...