Namenda for RSD
 

Hello Everyone,

I couldn't wait to post this. I hope everyone with RSD can be helped. I have started taking a drug call Namenda. It is currently FDA approved for the treatment of moderate to severe Alzheimer's. I am taking it for RSD. IT IS WORKING!!! I have horrible RSD, full body for years! This is the first medication (and there's been many) to make a difference, (other than just numbing the pain somewhat). I am still in the process of going up in dosage and am NOT 100%, but I am so much better. My understanding is this, the medication is approved for Alzheimer's up to 30 mg. per day We (RSDer's) need a higher dose. I guess I need to be careful here. Please talk to your doctors. I can't say enough about how much this medication has helped me. I can walk, where I could not before. I can sleep for more than 20 minutes at a time, where I could not before, I CAN THINK; my mind is so much clearer. The RSD in my head area is almost completely gone. Oh! there is another benefit to this drug, as a side effect, this drug helps break the body's addiction to opiates. I was using 125 mcg Fentanyl patches every 48 hrs just to get by. I am down to 75 mcg!! no withdrawal. Please be careful, talk to your doctors.

Best of Luck to All

Sherri,
that's Great to hear!
I take Namenda, just a small dose @ bedtime. like 15mg. I'm going to have to speak to my doctor about that dose, as I also have a TBI, I take aricept in the AM. (Another altzheimer's med).
I honestly don't notice a big difference with the Namenda, but, I take 50-60 mgs of methadone /day also.

I'm so very thrilled for you, that you're getting such good results!

Be Well!

Pete
asb

I was on NAMENDA for a couple of months a few years ago.... I believed it was working for me but because is was off label to use for RSD... I could not get any refills.


I believe it's about time that I ask my doctor about trying this medicine again.

Thanks for jogging my memory about this medicine!!!

:hug: gentle hug...
Abbie

My medical plan is self paid blue cross personal choice.
They pay I think 70-80% for Generics.
50% for name brands (wether there is a Generic, or not!). Grrr.

Anyway, My point is, ask your doctor for samples.
And, assess wether it really helps.
He may be able to keep you in enough samples....
That'd be between you and your doctor.

I don't know what kind if any med plan you have, but, maybe your Doctor may need to write something for you?
(I think the companies like to give samples for off label use, so that it can become established as a "Labeled Use".)

Just a thought....

Pete

Thanks Pete... I'll keep that in mind... :Tip-Hat::Thanx:

Sherri -

I have taken 30 mg. of Namenda a day for 4 - 5 years (to which was later added 16 mg. of Razadyne ER) in order to hopefully forestall the loss of gray matter due to chronic pain. But I was advised by Dr. Schwartzman back in 2004, when it was just coming out in the U.S. market, that memantine was just too weak of an an NDMA receptor antagonist to be effective against RSD.

I am happy this is working for you, but insofar as you come onto this forum as a visitor to speak of considerably higher doses than the 30 mg. for which it's been approved, a few questions come to mind:

Just how much are you taking?

Is a doctor prescribing it?

Where at least my insurance - which is pretty good - will only cover 30 mg./day so long as I pay a $35 co-pay every 20 days, how much is it costing you?

And finally, are you aware of any safety studies that have looked at the drug at the dose you are taking?

Mike

Wow!Is this drug in the family of other drugs I have tried like lyrica, elevil ans such? What doe it really do? I have not yet found a drug yet that could help me but.... who know maybe this will be it. Thank you for sharing and I hope all continues to go well. Hold on to that doc. I he knows any doc around Tacoma, wa that is good pleasse let me know!
positive thoughts your way,
Jennele

Namenda is a NMDA receptor antagonist. It was available in Europe before coming here.

The PN board at the other location was really eager for this drug to come to USA. However, the FDA would not approve it for neuropathy..the studies were too weak.

So in this country it is only approved for Alzheimer's.

This study implies that Namenda for acute pain is not effective
but it may work for chronic pain...this study was done in rats.
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

This study shows Namenda less effective than dextromethorphan for neuropathic pain:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

People vary in response to drugs. So studies only offer a guideline to
drug use...there can always be exceptions.

Namenda questions
 

I anticipated those questions Mike before I made the post, but I felt it was important. As Pete spoke about in his reply, there are ways to get additional medication. My doctor only writes a prescription for the approved dosage. It is not costing me anything other than my co-pay for that approved dose. Since I feel my doctor is going out on a limb somewhat for me and other patients with very severe RSD, I am reluctant to say too much. Further, I would not want to cite an exact dosage amount because people should be advised, and followed by a doctor while taking this, or any, medication. There is much “talk” in the medical community (among those actively involved in treating and researching RSD) about this drug for RSD. My doctor is not the only one aware of using this drug in this manner. However, the only studies I am aware of in regard to the safety of this drug are studies by Forest Laboratories, the drug maker; and I am not aware of any studies of this drug at the higher-than-recommended dose I am taking. I was provided with the available drug studies. I made the decision, based on my current condition, that I would take the chance. Each RSD individual must make their own decision based on their circumstances. My RSD was so bad that I was very close to ending my life. I didn’t feel there was much “risk” involved for me. My reason for talking about this is simply to make anyone suffering from this terrible disease aware that there might be something else worth looking into. It has made a huge difference in my life, and the lives of my children. I will let all know if I suffer any significant side effects, so far I have not.

I cannot find the medication you mentioned, and I am from Europe. I searched through the entire official Belgian pharmacy database.
http://www.bcfi.be/

It's not there.

Where in Europe?

Its generic name is memantine. They probably have different brand names over there.

Yep, it's called "Ebixa" here, and is classified as an anti-Alzheimer medication.
http://www.bcfi.be/GGR/MPG/MPG_FJB.cfm#MP_02555

It is quite possible that this medication is branded under different names in Europe and North America. The best way to search for it would be to look for it by it's primary pharmacological ingredient.

MsL

Yep. See my post above. ;)

Thanks, Jennelle. And I will ask, I have an appt on the 29th.

Thanks to all. I have an appointment in NYC on Friday. All of this information is so helpful. I will have a list to ask. When I first had the TOS in 1998 I was lost. Now, we have computers and so much information available. Thank you for your help! Linda

Nomenda
 

Hi Sherri- I think it is so wonderful you found a drug that helps! I am just curious what type of pain does it work best on? I have a lot of muscle wasting type pain- not so much burning or skin sensitivity...Any infor would be appreciated ....

TY
Debbie

I have never heard Namenda (Ebixa where I live) mentioned for RSD before. I wonder, is there some kind of article on this?