Has anyone used Low Dose Naltrexone for RSD?
 

Has anyone used this med, or know anything about it? Apparently it has been helpful for many MS patients, and it seems it might be helpful for many people with autoimmune disorders (and there is some thinking out there that RSD is autoimmune).

Hi Curious--here's the thread! Breathing new life into it!

:D

no we see if anyone has. i think it is something to question. i know ldn is being used for ms and pd.

Yes, it sounds like it is being used for several things, with wonderful success for many. I would be willing to be a guinea pig with this one. The trouble of course would be finding a doctor to prescribe it. I just e-mailed Skip's Pharmacy with some questions. Since they compound it, maybe they know if anyone is using it for RSD. The rationale behind it makes a LOT of sense to me. I'd be willing to bet that folks with RSD have bodies that are deprived of endorphins, and if this influences immunity, causes an inflammatory cascade and perpetuates the RSD cycle.

By the way, I think I may have mentioned in a different thread, there are clinical trials underway on the use of this med for Fibro, and many people with RSD develop Fibro. Interesting coincidence.

I've never heard of it... BUT.....

I'm off on a search to see what I can find so that I can discuss it with my doc.

Thank you for bringing this to my attention!!
:)
Abbie

abbie, go look on the ms forum.there is an LDN sticky.

This is exciting--I e-mailed Skip at Skip's Pharmacy (they are a compounding pharmacy and deal with this med a lot) to ask about his experience with LDN and RSD patients. He said their 3rd or 4th patient had RSD and they were able to significanly reduce her neurontin dosage and she has not returned to pre-dosing pain levels. It has been 8 years.

:hug: that is great millerprof!!!

Hi Desi,
Yes, you are right, Naltrexone is usually used for alcohol or drug dependence, but this is in high doses. In very small doses it seems to help with these other disorders, such as autoimmune. Where I could see it not working for RSD is for those who do take opiods--perhaps it might render them ineffective for the person, but I'm not sure it would at such a small dose. It would definately be considered "off-label" or experimental for RSD, but since Naltrexone is approved by the FDA, a doctor could apparently use their discretion. It does sound like there is a lot of controversy over its use. If you go to http://www.lowdosenaltrexone.org you can also read more about it.

i use the LDN for treating my rrms. and as ive said on another thread i cant say enough good things about what its done for me. as i undertand it naltrexone was originally developed to help keep heroin addicts clean. then they noticed it helped alcohalics sober too. somehow they got to looking at autoimmune things.(but i digress.......)the thing im getting at is the dose for heroin and alcohalism was about 50mg.......LDN is roughly 3-4.5mg. they had to go up to 300mg daily to see significant liver risk.
the LDN we all use is an off lable script, but so what? writing an off lable script is perfectly legal, not to mention a common practice. neurontin was originally developed as an anticonvulcive for epilepsy.http://www.rxlist.com/cgi/generic/gabapent_ids.htm
now its a popular MS drug.its also used as an antispasmatic for parkinsons. immuran is used in RA and as an immune rsponse suppressant for kidney transplant patients.......... also a popular choice for MS
http://www.medicinenet.com/azathioprine/article.htm

they should at least let you try it.

I'm going to sound like a dope, but what is rrms? Is this a form of MS?

Hi Millerprof. Yes, RRMS stands for Relapsing-Remitting Multiple Sclerosis.

I began LDN Aug. 4th of this year. My daily dosage is 4.5 mg.

I'm kind of sluggish in the mornings and stiff, so I may decide to cut back to 3.0 mg.

I'm interested to know how it helps people with other diseases. Thanks for this thread.

Started Naltrexone & Ketamine Troches - CRPS, MS, & TM
 

Hi, I've been a Dr. Schwartzman patient since 2008 when I had my first Transverse Myelitis onset. Since then I've gotten MS and CRPS (stage IV) (diagnosed & treated rigorously by Dr. S... until recently as he seems to be heading toward semi-retirement).

I just began seeing Dr. Datta in Hackensack, New Jersey, an amazing, brilliant anesethesiologist and human being, who is working on what seems to be a trial of Naltrexone and Ketamine Troches (lozenges 3x/day). I'll also be getting my IV ketamine boosters with him from now on, and he'll be adding IV lidocaine, as well as increasing the dosage of Ketamine.

I hadn't heard about the Naltrexone for MS, but I'm a lucky multi-neuro-ite if this CRPS treatment will help both.

I'll keep you posted.

But if you want to get in touch, feel free to email me at ** I don't check my email often anymore - low-vision, etc; but if you make the subject clear hopefully I'll get back to you quickly.

Dr. Datta seems very excited about this new treatment regimen and states that he's seen patients (not stage IV,....) have complete remission or reduction of symptoms, though I'm not sure how long it takes. I think I recall him saying about a year, but my memory is unreliable. :)

Best to all.

Your neuro sister,
Melanie

I have it!
 

I have a bottle of 3mg pills...just been afraid to use it for some reason ...I will start it next week. I am also trying Valium instead of Xanax in hope that it will help with my muscle spasms

My daughter has used this for several months for RSD pain and I do think it minimized lenght of flairs. We got it from Dr Sajben at painsandiego dot com

She has just updated her website this week to include a story of a woman with MS and RSD.

What a coincidence !!!!
 

Hi, my name is Danielle. I haven't formally been diagnosed with CRPS yet but we share a doctor. I have been seeing Dr. Datta for almost 3 years. At my last visit he mentioned he had just started treating people with it. I am so desperate for pain relief. I am going to try the low dose naltrexone ASAP.

I am on LDN - now 10mg per day. I think it may be helping some with the pain and inflammation. Before I was on 15mg per day.