Low Dose Naltrexone

Hello to all.  I did a site search (from a different forum) for LDN and was surprised to not come up with any referrals to the MS forum.  As I understand it, this drug is showing great promise for MS (in particular) and wonder why no one here is apparently trying it?  Mostly just curious.  Thanks.

I did some searching on Search Google.  I looked  for (1) Naltroxene and National Multiple Sclerosis Society and (2) Naltoxene and Multiple Sclerosis.  I found quite a few sites there.  It says that no clinical study has been conducted with Naltoxene for MS.  Maybe in the future there will be trials done.  But, as for myself, I would not try it. 

Hey 20Years

U'r right...there is no concrete evidence that shows this med difinitively improves the course of ms. That's the primary reason most don't use this med. The fact that FDA approval for use with ms has not been recieved is also prominent in docs not prescribing it.

As for the news stories u'd like to share, just post u'r links and that should do it. We can't post the article due to copyright issues, but the links should do just fine.

Take care and thanks for this info!

ok kewl all....i am just leery of new things as you know me and my rollawalker. and it is nice of you sister sister to want to help. thank you

Sister sister,

The reason, in my opinion, that no one here uses low dose naltrexone is that it does not work.  I did a ton of internet research and talked to both my neuro and my GP about it.  My neuro says that it was tried for MS (off label) more than twenty years ago.  It has only shown occasional anecdotal success.  I found a compounder and my neuro was fine with me trying it and offered to write me a script.  She also explained that her associate used to prescribed it for years without any notable success, well that was enough for me.  The other problem is that if you are on LDN, you cannot take many, many other meds that treat symptoms.  I want a proven progression therapy that allows me to use other meds that treat my symptoms and maintain my quality of life.

I also see that you have posted about LDN in lupus.  You say that you have no vested interest and yet you do seem to be pitching LDN. Your offer to e-mail others (yet you have no e-mail listed) really makes this suspect.  Make sure that you understand our rules here at HW and that you understand that spamming or selling anything will get you banned.

Gretchen, sorry if I overstepped my bounds. I post and read at the lupus forum on behalf of my sister (thus, my screen name of Sister Sister) who has been too sick to do so for herself. The recent t.v. news that I found gave me hope that this might help some folks here...especially the comments that some viewers with MS had posted at the end of the one done by the ABC affiliate. My only vested interest is that I lost a very special friend to MS and detest it for that very reason. Again....sorry.

Barb, here are some references to current reports I have found:

http://www.lowdosenaltrexone.org/ldn_latest_news.htm

This is a Feb. 2007 article, but reports two patients with positive outcomes (Wilkinson and Finlayson):

http://www.medicalnewstoday.com:80/articles/62999.php

(Mod. Note: I just activated u'r links.)

Post Edited By Moderator (rhondab) : 8/19/2008 6:01:25 PM (GMT-6)

The Italian study you allude to is mentioned in the first link in my post dated 8/18. In general, it seems to work for some and not others, based on what little I've read about it so far. Since it's also used for Crohn's, I read about it at that forum as well and noticed similar mixed results for those folks. Glad it seems to be helping you and I hope it continues to do so.

I just read about LDN today. I have an appt with my neurologist at USF Tuesday. I am going to ask him/her about it and what effects it would have with the Tysabri I have recently started.

Sister

Thanks for you info on LDN. When you look at steroid therapy and immunosuppressants, some of the long term damage can be really bad. I've been told that once they get rid of my supposedly latent TB infection (I think I have some extrapulmonary, had pulmonary at one time), that I will likely need steroids for the rest of my life because my whole endocrine system is damaged from whatever disease I had, they are thinking misdiagnosed TB that I fought off after the damage. Just getting rid of this supposedly harmless "latent" infection improving my health tremendously as my immune system doesn't have to focus so much on it. But I have seen family members on steroids spiral down and my health got worse on them because I just couldn't fight disease and I started getting all the sideffects. So now I look at anything before going back on steroids. I have ALOT of chronic pain due to neck surgery and am scared because of a bad liver I can't take antiinflammatories, so I may not even be a candidate. But if I could tough it out for a while, it might be worth a try before surrendering. My adrenals and the rest are not so bad that I couldn't live without the steroids. So before things get worse, it may be worth a try. How many weeks does it take to tell any difference, is it right away?

Thanks for your info. To me, steroid supplementation seems the last resort because then the glands will die. I definitely urge anyone who hasn't had one in a while to talk to their doc about getting a tb test and possibly seeking treatment. It really did a number on me having it for over twenty years. My poor son has troubles and it was detected during a prenatal exam. I was sick with it during my pregnancy, though I was never tested for tb and they just gave me really strong antibiotics.
My immune system and endocrine has been a mess ever since.