Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-08-2007, 03:55 PM #1
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Attention new med sounds promising..

http://www.clinicalpain.com/pt/re/cl...856145!8091!-1
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Old 05-09-2007, 11:23 AM #2
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Hi Sandra,

I'm pretty sure this is the same drug Mike (fmike) has been taking, Namenda.

Mike, if you see this, what do you think of it?

all the best
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Old 05-09-2007, 03:17 PM #3
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Hi. there. The first thing that has to be said it that the abstracted article doesn't list the dosages that were used for mementine (Namenda) in the study; if I can get my hands on a full text of the study I will post it. I know when I first heard about the possibility of using the drug - as an NDMA receptor antagonist - I was told by Dr. Schwartzman those the dosages being recommended by the manufacturer were too low to make a difference. And indeed, the maximum daily recommended dose is 20 mg. a day. I'm on 30 and it hasn't seemed to make a difference in the pain levels, although it definitely helps with my thought processes.

Cut to the Winter, 2007 issue of the RSDSA Review, in which there's a long testimonial about the relief that one "Dave in Arizona" got through switching to 60 to 80 mg. a day of mementine, combined with 30 mg. of methadone. Almost total relief after 30 years of RSD in his feet! Nevertheless, the article cautions that the long term effects of high dose mementine is unknown and that insurance will only pick up 20 mg. a day.

I know that my pharmacist has skinned that particular cat by refilling my prescription - with a fresh co-pay each time - every 20 days instead of every 30. I can only imagine the machinations in going up to 80 mg. a day: I guess that would mean refilling it every five days or so. (Good luck going out of town on that program.)

Anyhow, that's what I know. I will definitely raise this with my neurologist when I see him in a couple of weeks, although I suspect he will fob this off on my next quarterly appointment with my pain management specialist at U.S.C.

Mike

p.s. To Artist: sorry about taking so long to get off the mark on that photo-posting but between getting ready to move and helping a friend who has to rush a manuscript of a novel to her publisher, I've been a little swamped of late. I will however get to it as soon the dust settles.
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Old 05-09-2007, 06:51 PM #4
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Hi Mike,

Thanks for the info - interesting that it does apparently help with the brainfogs, shame it takes such a lot to do it. Now, a happy medium, and I'd quite like to give this a try.

No rush on the pic, whenever...
all the best
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Old 05-09-2007, 09:12 PM #5
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Here's the article. It's unclear what the doses were, the authors apparently got everyone up to 30 mg./day but apparently tried to go higher:
A final target dose of 30 mg/d was defined and was applicated [sic] twice a day (15 mg/morning and 15 mg/evening). After arriving at the dose of 30 mg/d without any serious side effects, further increase of the daily intake was possible.
I am frankly surprised that they achieved their rather impressive results, albeit in a small sample, with only 30 mg./day, unless for some reason they're not comfortable discussing the actual therapeutic doses. In any event, here it is.

Mike
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Old 05-09-2007, 10:41 PM #6
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I've been reading up on this drug, too, and have gotten mildly encouraged (that's as hopeful as I ever get with RSD treatments). It is the most promising drug out there for protecting brain matter from atrophy. Your brain atrophies after years of chronic pain. (Another aspect of RSD doctors don't mention till the RSD progresses). The parts of the brain that atrophy control and regulate the central nervous system, so the symptoms tend to be similar to Parkinsons or traumatic brain injury. Nemanda has been successful at preventing, slowing, or improving brain atrophy and damage in those two illnesses/ parts of the brain, and there is a surprisingly strong record of success. Nemanda is now being tried for a lot of other neurological conditions besides RSD/CRPS - not for pain per se, but to target very specific parts of the brain that deal with regulating heart, blood pressure, emotions, adrenaline, sweating, language. If folks are interested I can provide some citations.
Maybe Nemanda is best suited for people with RSD starting to experience symptoms of central nervous system failure; e.g., symptoms apart from pain such as low blood pressure, fainting, inability to initiate movement, inability to swallow, vision changes. I don't know. But it seems to have prevention possibilities, to prevent worsening, which is a hopeful thing.
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Old 05-11-2007, 12:15 PM #7
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Default Been on namenda also

About a month ago I presented my Dr. with 2 lists. One was a list of about 35 meds that I had taken (with dosages listed) - that did not work at all for the pain. Then I gave him another list of drugs that I had read about via neurotalk, internet , research, etc. that I would like to try for pain. He is extremely cooperative and is most willing to try additional drugs to help me as he knows how I am suffering with no meds for pain. One of the drugs on the list was Namenda. Interestingly enough that was the first on he chose for me to try. That would have been my choice also.
He prescribed 20 mg. a day. Usually I tolerate drugs well (ex. 3600mg. neurotnitn doesn't even bother me or touch the pain). Unfortunately after just a few days on the namenda I became very nauseous, dizzy and very out of sorts. I could not contue taking it and it did not help the pain at all.
I am still hoping I findthat miracle drug as nothing has worked thus far. I was really hoping the namenda was it. I have also been on mexilitine(I think that't it). No help either. Well - I still have other drugs on my "to try" list. Maybe one will help.
Sydney
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Old 05-30-2007, 04:49 PM #8
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Smile Just prescribed Namenda

Hi everyone,
I was just prescribed Namenda by my pain Dr. today. She will start me on 5 mg per day, and then I will go up to 10 mg per day. From what I have read on neurotalk, this is probably not a therapeutic does. has anyone heard if this medication causes long-term side effects? Anyway, I think I will return to see m y doctor sooner so that we can increase the dose to a more therapeutic level. I'll post when I find out if this medication helps!

Thanks everyone for your posts, they really help!

-Moselle
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Old 05-31-2007, 10:07 AM #9
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just bumping this up for the person asking about this medication ....
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