LDN - Low Dose Naltrexone

Somebody tell me about this medication. Have you tried it? Is it effective? Is it instead of CRABs or in conjunction with? I'm having a major flare-up of symptoms. Haven't had a good day since Sunday. That was a great day until I crashed around 4:30. But I'll take whatever time I can get.

I did the chat on Monday. What great fun! For any of you who have considered it, I'd definitely recommend it. I haven't laughed so much in ages.

Vickie

Naltraxone, the N in LDN, is a drug that is approved by the FDA to treat some illness(s?) OTHER than MS. Some folks have found it helpful in Low Doses,  (The L and D in LDN). If you do a google search you'll find TONS of information about it.  Seems like there is one doctor who tried it on some of his patients, some of them had some good symptom relief, he spread the word on the net, and many folks now try it.  You have to find a pharmacist willing to make it up (compound it), because it doesn't come in a conventional or standard form. Some doctors who are open to alternative/complementary medicines will be wiling to prescribe it; others won't. 

Supposedly it can be taken with one of the CRABS -- I think Copaxone, but I may be wrong. I'm sure one of the believers in the drug will be along to make all the corrections necessary in this post.

The National MS Society has agreed to (at least in part) sponsor a legitimate double-blind study of the compound to see if there is any benefit to it, but that study hasn't gotten underway yet (or if it has, it isn't complete.) 

People who take it swear that it helps with symptoms, and slows progression. But of course all their reports are anecdotal - -not backed up by any legitimate research. And there's no way of knowing how many folks have tried it without any benefit.

It apparently is cheap -- around $35 a month -- if you can get the prescription and find a pharmacy willing to concoct it for you.

Hi Vicki,
When i was first diagnosed (dec06) i was researching LDN heavily. Last week i went for a second opinion to Hershey Medical Center to the MS specialist . I did ask about it. (they are actually doing a LDN study for Chrons Disease there) He said that patients consider LDN after no results with any of the other CRAB meds or they do not want to put the crab meds in their bodies b/c of the possible side effects.. He said he, even tho there are many patients using this as treatment, would not consider this for treatment b/c there is no proof that it will slow progression.He also said as uppity said, it is hard to find a doc to prescribe, and also a pharmacy that will grind it down to 5's or 10's (it only comes in 50 mgs)> He stated that until it is proven, he wouldn't suggest it. Alot of the web sites have testimonials of MS patients going from wheelchairs to walking, but alot of negative stuff too.I chose rebif as my first med and he said if i feel good why chance it, and i do feel good most of the time on the rebif. LDN is used in high doses in people recovering from heroin addiction. Interesting but i think i would be scared. I too have such a great time on the monday chats! Talk to ya next week and i hope that you feel better soon!
Lynn

madlou,
Does the weather bother you? It is so damp and rainy here in PA too and my body aches me! I never read anything about the weather and MS. Just wonderin>
thanks
Lynn

Lynn

I would be interested in knowing what bad side effects you read about with LDN?  I could find nothing other than sleep disturbances as in vivid dreams in the first week or two.

Thanks Lynn