LDN - Low Dose Naltrexone

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madlou
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 4/26/2007 7:55 AM (GMT -6)   
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
Rebif 44 mcg x 3; lyrica; ambien


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/26/2007 12:12 PM (GMT -6)   

Hey Vickie!!

Awww...i'm sorry!!! I didn't realize u were having such a rotten flare. I can't answer u'r questions about LDN, but i'm sure others will be along soon to help with it.  

I'm so glad u enjoyed chat on Monday!! Laughter can certainly be one very healing factor in our lives. It seems to bring us thru so much...tho,sadly...not worms. ;) U have a great day and feel better friend. If u need anything to lift u up...just think of gretchet and her many issues. hahaha

 


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 4/26/2007 12:56 PM (GMT -6)   

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.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 4/26/2007 3:53 PM (GMT -6)   

Vickie

I have been taking Ldn since nov '06.  I noticed a huge improvement in bladder symptoms starting at day 10.  My excessive hair loss which I have ahd my whole life stopped by month 3 on ldn.  It was like a miracle because when I used to blow dry my hair the sink was full (and I mean full!) of hair.  Now a few strands.  Definately is working on my immune system. 

I am also being treated for lyme and the heaviness in my legs has gotten better.  Not sure if that's the ldn, or the abx killing the bacteria. I do know know that it is the ldn with the bladder improvements because once I ran out of ldn for a week and around day 4 without ldn the problems came back.  When I started it back up they went away again.  

I am a believer in strengthening the immune systen not suppressing it, and that's what ldn does.  I believe you can use it with one  of the crab drugs. Uppity is right it is cheap.  The pharmacy I use in Fla charges $30 month which inc shipping.

Check out their website www.lowdosenaltrexone.org.


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 4/26/2007 4:24 PM (GMT -6)   
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
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 4/26/2007 5:39 PM (GMT -6)   
Thanks for the info. I guess I just grab hold of straw sometimes. I'm sure ya'll understand that. This has been a rough week. The weather has been rainy. Everything, including all the pollens, are in the air. I think I'll stick with Rebif, Lyrica and diet. This is such a great site. I will definitely try to make the next chat!
Rebif 44 mcg x 3; lyrica; ambien


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 4/26/2007 7:17 PM (GMT -6)   
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

madlou
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 4/27/2007 7:38 AM (GMT -6)   
Yes, the weather does bother me. I always had problems with sinus headaches. That doesn't seem to be a problem now but I believe the weather (rainy, damp and cold) is causing this stretch of discomfort.

Rebif 44 mcg x 3; lyrica; ambien


KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 4/27/2007 12:50 PM (GMT -6)   

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.

 

 


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 4/27/2007 7:11 PM (GMT -6)   
HI KIMC,
I will have to look if i can find the sites. I cant remember i read so much about it. I will look for you.
Lynn

KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 4/28/2007 7:52 AM (GMT -6)   
Thanks Lynn
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