3 years on ldn

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

3 years on ldn

Postby Mary » Tue Feb 19, 2008 12:18 pm

This week marks three-years I have been taking LDN. I took 3mg for most of the time and within the last few months have upped it to 4.5mg. There was no real reason to go to 4.5, I just knew from reading that it was the 'optimal' dosage for females if you could manage it and when I had a few days off in a row I started at 4mg (only side effect was some disrupted sleep which took a few days to adjust). I don't notice a difference in the way I feel between 3mg and 4.5mg. There is not much to report about my usage of LDN (which is ok I guess). I have been very lucky so far, one episode almost 4 years ago and nothing since. I have some transient symptons once in a while, some pins and needles in my lower leg when I get tired and some days my legs feel a bit weaker than others, but I can usually attribute things like that to being extra tired. I haven't had a mri in over a year and after my last one I never did get a call to go into the office, and I never followed up with the clinic because I hate going there and always end up bawling and feeling quite silly and unstable so I just left it alone. I have never taken anything else except ldn and with the three mri's I've had there hasn't been a lot of change, some spots on the brain, some go, some come, but it all kind of evens out in terms of how many there are. So, that's about it, no news is good news!
Mary
User avatar
Mary
Family Member
 
Posts: 63
Joined: Tue Feb 08, 2005 4:00 pm

Postby ShootingStar » Thu Sep 11, 2008 6:31 pm

This is the kind of thing I like to see. It's now September, are you STILL taking it?

I can get a prescription for it, but I want to be sure it's what I want. My neuro will prescribe it, but prefers Rebif or Copaxone as he doesn't feel there is enough evidence for LDN.
~Kim in NV
User avatar
ShootingStar
Family Member
 
Posts: 38
Joined: Tue Mar 25, 2008 4:00 pm
Location: Nevada, USA

Postby Mary » Tue Sep 23, 2008 7:18 am

Yes, I'm still taking it. I think I'd like to try tysabri (for no reason other than it is a recognized treatment that has some documented positive results and of course there are the crabs that have documented results but I don't want to acknowledge this on a daily basis with needles and would prefer a once a month treatment), but my neuro tells me that I don't qualify for a trial for tysabri (or any other trial) unless I have a relapse...so I am satisfied to stay with ldn and be relapse-free (thankful). My neuro isn't sold on ldn and doesn't recommend it and it is my 'general' doctor who actually writes the prescription and she didn't want to do it without approval from the neuro. I brought info from the internet about ldn to my doctor (and neuro although she wasn't really interested in it) and pushed to get the prescription arguing that there was no cure, every 'approved' treatment was a crapshoot and that I had no control over this disease and that I should be able to have some say and some control over my treatment when at the end of the day we are all pretty much guessing at what may work. I haven't seen the neuro in over a year and my doctor continues to write the ldn prescription because it doesn't seem to be doing any harm (no relapses and no side effects).
User avatar
Mary
Family Member
 
Posts: 63
Joined: Tue Feb 08, 2005 4:00 pm

Postby ShootingStar » Thu Sep 25, 2008 6:34 am

Thank you for the reply! I will call my neuro today and get a prescription :D
User avatar
ShootingStar
Family Member
 
Posts: 38
Joined: Tue Mar 25, 2008 4:00 pm
Location: Nevada, USA

Postby ShootingStar » Thu Oct 16, 2008 4:02 pm

I've been taking 4.5 mg LDN for a week now. I feel my best today. The first three days I had a horrible attack of constipation like I haven't had since taking phen/fen back in '97 and figure it must be the LDN as nothing else was different. I also felt just as tired, and had a lovely attack of the anxiety/depression whines.

I have had VERY vivid dreams, but not nightmares so I don't mind. Today I feel much better and at least feel like I am doing something to help keep the MS at bay.
User avatar
ShootingStar
Family Member
 
Posts: 38
Joined: Tue Mar 25, 2008 4:00 pm
Location: Nevada, USA

Postby Brownsfan » Fri Oct 31, 2008 8:46 am

Nice to hear that others are doing well with LDN. I've also been on 4.5 mg. for 3+ years with zero disability and no relapses. Full disclosure - I also take copaxone. However, the compounding pharmacy that fills my copaxone has done surveys of their LDN patients and has found that all are doing quite well. The doc who prescribed also told me that he would absolutely make sure he took LDN if he had MS.
User avatar
Brownsfan
Family Member
 
Posts: 91
Joined: Thu Aug 25, 2005 3:00 pm

Postby CureOrBust » Sat Nov 01, 2008 5:08 am

Brownsfan wrote:However, the compounding pharmacy that fills my copaxone has done surveys of their LDN patients and has found that all are doing quite well.
A more accurate survey would be of all those that have tried it. If it does not work for someone, they will normally stop taking it, as it has no formal phase III trial proof baking it.
User avatar
CureOrBust
Family Elder
 
Posts: 2896
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby DIM » Sat Nov 01, 2008 7:37 am

What about this:

<shortened url>

A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis.

Gironi M, Martinelli-Boneschi F, Sacerdote P, Solaro C, Zaffaroni M, Cavarretta R, Moiola L, Bucello S, Radaelli M, Pilato V, Rodegher M, Cursi M, Franchi S, Martinelli V, Nemni R, Comi G, Martino G.
Institute of Experimental Neurology (INSPE) and Department of Neurology, San Raffaele Scientific Institute, Via Olgettina 58, Milan, Italy; Fondazione Don Carlo Gnocchi, IRCCS, Milan, Italy.
A sixth month phase II multicenter-pilot trial with a low dose of the opiate antagonist Naltrexone (LDN) has been carried out in 40 patients with primary progressive multiple sclerosis (PPMS). The primary end points were safety and tolerability. Secondary outcomes were efficacy on spasticity, pain, fatigue, depression, and quality of life. Clinical and biochemical evaluations were serially performed. Protein concentration of beta-endorphins (BE) and mRNA levels and allelic variants of the mu-opiod receptor gene (OPRM1) were analyzed. Five dropouts and two major adverse events occurred. The remaining adverse events did not interfere with daily living. Neurological disability progressed in only one patient. A significant reduction of spasticity was measured at the end of the trial. BE concentration increased during the trial, but no association was found between OPRM1 variants and improvement of spasticity. Our data clearly indicate that LDN is safe and well tolerated in patients with PPMS.
User avatar
DIM
Family Elder
 
Posts: 384
Joined: Thu Feb 28, 2008 4:00 pm
Location: GREECE

Postby CureOrBust » Sat Nov 01, 2008 7:17 pm

Dim, do you have access to the full article? The abstract doesn't make it clear if there was a placebo arm? or if it was patient and / or rater blinded. Although the results sound very promising, I would guess if a statistical/numerical analysis of the results were performed on such a small group (that may not have been blinded / placebo arm) would not look that great (eg Confidence interval / statistical significance).

I really liked the fact that they actually MEASURED the beta-endorphins level.
User avatar
CureOrBust
Family Elder
 
Posts: 2896
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby CureOrBust » Sat Nov 01, 2008 7:28 pm

I did a search for the full article, after I posted :oops: and found the following link. Although its not the full article, it does provide a lot more information than is encompassed in the abstract. Specifically, it was open label. It contains the following paragraph, which has numerous interesting points; the last paragraph in particular caught my eye. ARTICLE
Study Results
LDN markedly reduced spasticity, while pain, fatigue and depression did not improve (or improvement didn't reach statistical significance). The study did not evaluate urinary frequency, a common symptom of MS and often reportedly helped by LDN. It should be noted that LDN is not intended for symptom improvement, but to slow down illness progression, though some patients do experience symptom relief.

During the six-month study neurological disability progressed only in one patient, which is quite a low number considering it was done on people with progressive multiple sclerosis. The study, however, was a preliminary one to assess safety and tolerability, not efficacy.

LDN was also shown to increase blood levels of beta-endorphin. Interestingly the highest levels were measured one month after cessation of the drug. Some of the symptoms were also at their lowest at this point. This raises the question whether LDN should be taken intermittently in PPMS for the best effects, but this is merely speculation.
User avatar
CureOrBust
Family Elder
 
Posts: 2896
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia


Return to Low Dose Naltrexone

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service