Low Dose Naltrexone as a Treatment for Multiple Sclerosis

Good for you for providing information to people about LDN. I was diagnosed with Primary Progressive MS in 2006 at age 54. The diagnosis was devastating, although I think I knew in the back of my mind there was a major problem. I had had weakness in my right leg for several years and had been falling, including a fall in 2005 in which I broke both of my wrists.

I came upon LDN through internet surfing and asked my GP to prescribe it. For me, the results have been wonderful. I immediately noticed an improvement in bladder function and also my mood. Within a few weeks, it seemed to me that my fatigue had lessened. There are other benefits with regard to symptoms, but those are the main ones. I also believe it has halted progression, which is huge, but this is something impossible to prove.

Most of the sites I visited suggested that the main improvement to hope for was slowing or stopping progression. Several said the major benefits came only after long-term use.

I hope you will find benefit with the drug. I told my GP I can’t “prove” whether the drug really helps, and he suggested stopping for awhile to see what might happen. That is something I don’t want to do!

I feel a deep sense of gratitude to Dr. Bihari who first started using the drug. He was a courageous man, willing to think “out of the box.”

Sincerely, Alexandra

I have been on LDN for almost 4 years at this point. I started at age 35 with a diagnosis of rrms. I had started some of the ABC drugs but came across the research on LDN and wanted to try it. My Dr who was a MS specialist said yes and prescibed it thinking that I was to stay on Avonex( not compatible with ldn believed). I stopped the injectable and went on LDN alone to give it a chance. I have had 1 relapse when I made a move across country, not happily I might add. Ask the new nuero for script and he said no. Since I was having a flair I undertood his point (confirmed with a MRI fall 2005). He recommended Novantrone and I declined. I was pretty depressed at that point but continued with the LDN. This past fall 08 I had a new MRI . I brought the one of my first MRI’s done at Rush U in Chicago and had him compare the two. As he looked back and forth at both MRI’s he looked at me and uttered the words ” You might be making me a believer out of this LDN”. I was taken aback because he had been very adiment 3 years ago about me not taking the LDN. As I got up to leave I asked him if he would write me a script so I didnt have to continue with the phone consults. He said yes and then informed me he had 3 people on LDN. His practicc has over 3,000 MS patients. I still have tingling , fatigue numbness when I am tired. It is not a cure but this is the course Im staying with. FYI- I didn’t start LDN because of insurance issue ie $ or fear of injecting myself. I felt that it was my best option.

My experience is so similar to the first two posts I could just say “ditto”…..My MS is R/R. I was diagnosed in the mid-1980’s. The ABC’s were all that was available…I tried Avonex for over a year. I came across Dr. Bihari’s research and asked my neuro to prescribe naltrexone….he said “no” and still says “no”. There was a veiled threat to stop seeing me if I started taking it. We worked that out…he still sees me….and since I’ve been on LDN (over five years) I have NOT had any deterioration on my MRI’s. I am stable…and my canes are essentially collecting dust…I continue to experience fatigue…but not to the extent I used to. I can’t prove the LDN stopped my progression…but I was on a downward path and I stabilized. I am so thankful to the doctor who does prescribe my meds. Thank God for those who will consider alternative therapies. It has made a huge difference in my life. I don’t plan to ever stop taking it.

My wife (who was diagnosed with R/R over 15 years ago) tried it but, when it didn’t seem to do anything for her after about 6 months, she quit. She did also have vivid dreams which, we understand, is a known side effect.

Diagnosed with rrms 4/2007, was on Beta Seron till 12/2007, told MS was progressing bad. Found LDN, started 4/2008, 4.5mg nightly. Last MRI showed, no new lesions, old ones dried, no symptoms and no more progression of disease. LDN seems to be a miracle, I know it doesn’t work for everyone but it’s definitely worth a try by anyone with MS!

I’ve tried LDN for 3 months and noticed no improvement at all. I’m sorry to say I in fact, felt worse on it. I was on Copaxone along with it, so didn’t stop my other therapy in order to try LDN. It’s definitely worth a try, but with anything, it doesn’t work for everyone and is certainly no cure for MS. I had high hopes that I’d be one of the lucky ones who noticed great improvements on it.

Based on Pixie’s comment, but also on the mechanism of Copaxone I wonder whether one can expect to see the benefits of LDN in a combination treatment (Copaxone keep the immune system permanently busy, with typical IgG values reaching over 5 times the natural value after a few weeks of treatment). I believe Julie is using Copaxone as well, and while I wish her all the best with her combination attempt, I won’t judge the effectiveness of LDN as a single therapy from her future experiences.

Going over the link Julie provided in her write-up, of personal accounts with LDN, at:
http://ms.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=ms&cdn=health&tm=3&f=22&su=p284.9.336.ip_p736.8.336.ip_&tt=2&bt=0&bts=1&st=3&zu=http%3A//www.revolutionhealth.com/drugs-treatments/rating/naltrexone

I couldn’t find reports of successful combination therapy using the two drugs. However there was at least one report that suggested LDN was helpful *after* discontinuation of Copaxone.

Maya, you are absolutely right about me being on Copaxone – I really appreciate you bringing up this point, as it may have taken me awhile to think about explicitly mentioning this. I am happy that I am giving it a go along with the Copaxone and documenting it, so that we can see what happens in combination (many people are probably in the same boat of being on Copaxone, but wanting something more). However, you are completely right that there might be an interaction that is overlooked, since there has really been no formal research on this. I think I will contact the pharmacist who filled my prescription and ask her about it – she is the most knowledgeable person that I have actually spoken with about LDN. Thanks again for your comment.

To everyone else, thank you for sharing your LDN experiences. I’m trying to get the “whole picture” here, and your input is essential.

I’m really not sure if it makes a difference or not, just thought I should comment that I’ve been on Copaxone about 9 and a half years now. I really think Copaxone loses it’s effectiveness after a certain amount of time, but I haven’t found any research to back that statement up. Just my own experience and the experience of 2 friends of mine who told me their neurologist ( a prominent MS Specialist in NJ. They both had the same neuro at one time) told them it stops working after 2 years. My MS Specialist neurologist here in PA, doesn’t agree with that. I am thinking of giving Betaseron a chance though.

I have been on LDN for 2 years. After the 1 year mark of being on it my MRI showed “significant improvement” and the lesions in my brain and cervical spine are disappearing. I have less of them and the ones that remain are getting smaller.

I have never been on any disease altering meds except medicinal marijuana. I follow an organic vegetarian form of the Swank diet, taking fish oils daily, yoga, and 4.5 LDN.

I had to work at getting LDN prescribed but after 5 physicians and being a member of the UCSF clinical trial on LDN I have my medicine. I would not have considered anything else. LDN is very safe, non-toxic, no side effects (some sleep disturbances reported in the beginning) and our bodies produce it naturally. It is an off label prescription so it is completely ethical and legal and has demonstrated to be safe up to 300mg. It’s dopamine.

And to include a side note: my cousin with Rheumatoid Arthritis is on her way to remission after being on LDN 4.5mg for less then a month and my sissy is on it for Chronic Lymphocytic Leukemia 4.5.

If someone needs to talk to a pharmacist, I would call Skip Lenz at Skip’s Pharmacy, Boca Raton, FL (800) 553-7429.

Also, Dr. Glick of the LowDoseNaltrexone.org website recommended against “negative stess” and that the effects of that type of stress would undermine all of the good that LDN is capable of doing.

In regards to Copaxone, I recall that it does lose its effectiveness because eventually the body develops antibodies to it.

I live disease free and I wish everybody the same success as I.

I tried it for 2 months after 4 months of nothing (had quit Rebif). Probably not enough time to get a good analysis, but I’ll tell you, the WILD dreams and sleep interruptions were interesting. Even at $40 a month (Salt Lake City) it didn’t fit into my budget as I’m a poor, 45 year old college student. Copaxone is cheaper at $3 a month with Medicaid. I haven’t had an attack for just over a year so I don’t know if it’s been luck, 3 months of Rebif, 2 months of LDN, or 3 months of Copaxone.

My neuro is awesome, he doesn’t agree with LDN but he will prescribe it. Dr. John Steffens, University of Utah.

Congrats for delivering the news about LDN to us with PPMS as you know there is really nothing out there for us.
I started my quest for a Dr. to prescribe back in 2003 and soon realised that Neurologists,for the large part are reluctant to prescribe any untried /trialed drug due to legal issues,…fair enough, we as a society have burned many a professional because the courts will rule in our favour.
But today a rather large trial of this drug on Crohns has been completed with outstanding results!
Personally I have been on LDN /4.5 mgs after 9:00 pm for six years and love it.My neuropathic pain,on my left side, left after three days and so did my bladder incontinence
So far I am stable.
Sure it’s no cure but what’s the harm in trying? I have never tried any other drugs for MS but this works for me.

Does anybody know what the result of the UCSF trial was? It seems it was completed in 2007.

I have been on LDN for almost 3 years at this point I am also taking 4-aminopyridine. Both meds come from a compounding pharmacy and my insurance doesn’t cover either, so it is all out of pocket for me.

I’m not sure if the LDN is working as I don’t feel any different, but the 4AP allows me to feel my feet again.

I have to make a comment about people who say “I was on it 3,6 months and saw no improvement and had a increase of symptoms”. YOU WERE NOT SUPPOSE TO SEE IMPROVEMENT if you did you were one of the lucky ones. If you read ANY OF the sights it discusses the reoccurence of symptoms the first few months. It is suppose to slow progression. I get very fustrated with people when they don’t do their research and expect a simple pill to cure everything. LDN is NOT a cure. I had a flair while on it but my MRI after 4 years shows a very positive outcome. And as I say “the proof is in the pudding ” And I have scientific backing a MRI as proof as what at is going on brain and it’s lack of new lesions.

Hello,
Does anyone have any knowledge about LDN interaction with Tysabri?
Thanks

Gideon Pharmacy is where I get my LDN from and I just paid $52 for 90 pills and that included shipping to California from NY. That is $17.333 a month.

People are listing pharmacies but isn’t getting the prescription the more difficult part than getting the drug? Thanks for any clarifications you may have.

I’m repeating myself here: has anybody heard the outcome of the UCSF trial of LDN? It would seem strange that the trial is done but no results would be public yet.

Alaina, I have a question about your experience with LDN at UCSF, as this is where I am being treated as well (wish Julie’s awesome blog would also offer a way to network, i.e. by sending private messages to posters! The email address wouldn’t have to be revealed…). Would you mind contacting me at belgium.mark@yahoo.com, or should I just ask here?

Well, the number of positive “anecdotes” about LDN is very convincing I have to say, to the extent that it seems hard to imagine that these are coincidental cases of people with a mild progression just thinking it’s because of the drug. No new lesions after several years? Shrinking lesions? Seems rare under any of the other drugs.

One question I have is about brain parenchymal volume. Usual decrease is 0.8%/year in people with MS I think, versus 0.2% or so in those without. I wonder if LDN has a positive effect there as well? Do any of those here that have used it have any data they can share?

Thanks!

Hey Mark (and everyone else) – if you guys want to have a conversation in the forum, please go ahead and do that. It allows you to reply to someone’s post by e-mail, but the address is not displayed. Look right under the blog post and there is a link to “MS Forum” (also on several other places on the page). There is already a conversation going on now about LDN, or you can start your own thread.

I really like that people are talking in the comments section of these blogs, though, as it is much easier for people surfing for information on LDN to land on the blog and read the comments to get an overview. Think of it kind of like a party – the comments section is the dance floor and the forum is like little tables where we can have conversations.

Puma – I’m looking into Tysabri and LDN, but I’m guessing it’s a no-no, since Tysabri works directly on the immune system and there would probably be interaction.

Monika – yes, the results are out from UCSF – it was my oversight in the overview article to mention where the data was from (which I will correct now). The data has not yet appeared in a peer-reviewed publication. Here is the para from my article: In an 8-week placebo crossover trial conducted among 80 people with relapsing-remitting and progressive MS, it looks like LDN did not really help the physical functioning of participants, but did produce statistically significant improvements in quality of life measures of mental health, pain and self-reported cognitive functioning. Interestingly, this trial was funded by patients who raised funds to sponsor it.

I would like to clarify that the UCSF clinical trial used as its exclusive testing measure a computerized questionnaire that primarily addressed my, and other patient’s, quality of life.

I do not believe that physical improvements could be claimed since there were no physical exams or MRI’s administered. The Quality of Life Assessment was the only level of assessment given.

I can tell you from my experience that when I went in for the final appointment that there was quite a buzz among the patients. . . everyone had a sense they were on it (double-blind study) because everybody “thought they were getting better”.

What is frustrating reading your description of the UCSF study, and others I have read, is that they begin with the study NOT proving physical benefit of LDN when quality of life was the question being addressed. Reviews should focus on the goal of the study.

Also, I believe that a study focusing on the physical benefit of LDN would cost much more than this, patient funded study had to spend.

I have been on LDN 3mg for 2 months and copaxone for 8 years. To date i notice no change and other than sleeping troubles nothing has changed. i wil stick with this for 6 months to give it a good chance. Only hope something changes.

OK, I started a discussion of LDN users experiences with their physicians at http://forums.about.com/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=ab-ms&tid=394. I hope this will also be a way for people interested in starting the drug (such as myself) to find out whether there are physicians in their area who are prescribing the drug. A problem appears to be that there is no option for users to write others personal messages to others without revealing their email addresses (and without seeing the email address of the recipient). For example, if somebody wants to provide information about a prescribing physician without putting it in the forum for everybody to see.

I work full-time and have the progressive-relapsing form of MS – will this LDN adversely affect me – will I still be able to work and function normally?

What timing! Thank you Julie. i am to begin LDN tonight and the prescription was offered to me last week during visit to my neurologist, Dr. George Kraft, at UW for ppms. No drugs were ever prescribed for me except medical marijuana. I had to do my homework on LDN however. He gave me a script for 4.5 mg as was used in the UCSF trial, but I was dubious, having taken that dose in 2002 from Bihari’s script and having found my stomach couldn’t tolerate it. Sure enough when I went to the (much updated) lowdosenaltrexone.org site i found two important footnotes. i have hypothyroidism and take thyroid meds and the site said in that case one should start with 1.5mg., have thyroid tested after 3-4 weeks and see if one needed less thyroid because of the LDN’s possibility of making you hyperthyroid. Another footnote said that if your MS gives you leg cramps (mine does) you will most likely need to stay on a dose of 3mg forever. Hope this info helps somebody. i am excited to start the LDN and scared it won’t work, just as others have said.

Âñåì êòî ñïðàøèâàë ãäå áû íàéòè ôóòáîëêè ñ íàäïèñÿìè íà àâó â èíòåðíåò ìàãàçèíå ôóòáîëîê, çàãëÿíüòå ñþäà ñìåøíûå ôóòáîëêè . Òàì ÿ çàêàçàë ïîäðóãå ïðèêîëüíûå ôóòáîëêè ru

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Ñèñòåìíûå òðåáîâàíèÿ Adobe Photoshop CS4 ñêà÷àòü photoshop ñ êëþ÷îì òîððåíò:

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Ïðîöåññîð 1,8 ÃÃö è âûøå
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Apology lawyers representing the US Army analyst accused of leaking superintendence secrets be experiencing asked the investigating gendarme to to aside.

The solicitation came as Covertly Bradley Manning, 23 – pozycjonowanie, appeared at a military court owing the leading lady time.

He faces 22 charges of obtaining and distributing rule secrets – which he allegedly leaked to anti-secrecy fingers on Wikileaks.

The Article 32 hearing when one pleases clinch whether Pte Manning is to bear trial.

The hearing offers the primary occasion an eye to his vindication band to this juncture their anyhow since he was arrested in Iraq in May 2010 and placed in military custody.

It is delightful function beneath impermeable guarantee at an army base at Fort Meade, Maryland.

As the hearing opened, Pte Manning’s guard yoke asked recompense the investigating policewoman – tantamount to a pioneer calm down in a civilian court – to nullify from the crate, the BBC’s North America rewriter Device Mardell reports from the base.

Pte Manning was reported to be sitting in the courtroom dressed in military khaki and wearing black-rimmed glasses.

During the Article 32 hearing, which is close to a pre-trial hearing, both prosecuting and barricade lawyers commitment wear out their initial cases and are permitted to cross-examine witnesses.

Claim counselor-at-law David Coombs began proceedings aside switching the unintelligible onto investigating director Lt Col Paul Almanza, who he described as “bitter”.

Lt Col Almanza is a quondam military judge who at in a jiffy works on the side of the Section of Justice. His negation to endure all but two of 38 altercation witnesses meant the fortification could not adequately get the drift their victim, Mr Coombs said.

Proceedings are expected to last in all directions from five days, after which recommendations set be made to a military broad, who thinks meet conclusion whether to proceed to a blazing irritation, according to Mr Coombs – pozycjonowanie.

The BBC’s Paul Adams says the soldier’s stronghold overpass is likely to dispute that minor evil came of the leaks, and that their unchain was in the greater civic interest.

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