[olsen]

Pilot trial of low-dose naltrexone and quality of life in multiple sclerosis
Bruce A. C. Cree, MD, PhD, MCR *, Elena Kornyeyeva, MD, Douglas S. Goodin, MD
Multiple Sclerosis Center at University of California, San Francisco, San Francisco, CA

email: Bruce A. C. Cree (bruce.cree@ucsf.edu)
*Correspondence to Bruce A. C. Cree, Multiple Sclerosis Center at UCSF, 350 Parnassus Ave., Suite 908, San Francisco, CA 94117
The patient sponsors of this study did not participate in the design, conduct, or analysis of the trial and did not help write the manuscript. To our knowledge, this is the first patient funded clinical trial in MS.
Funded by:
Sammy Jo Wilkinson of ldners.org
Fundraisers through an unrestricted gift to the UCSF MS Center
Abstract

Objective
To evaluate the efficacy of 4.5mg nightly naltrexone on the quality of life of multiple sclerosis (MS) patients.

Methods
This single-center, double-masked, placebo-controlled, crossover study evaluated the efficacy of 8 weeks of treatment with 4.5mg nightly naltrexone (low-dose naltrexone, LDN) on self-reported quality of life of MS patients.

Results
Eighty subjects with clinically definite MS were enrolled, and 60 subjects completed the trial.... The high rate of subject dropout and data management errors substantially reduced the trial's statistical power. LDN was well tolerated, and serious adverse events did not occur. ..

Interpretation
LDN significantly improved mental health quality of life indices. Further studies with LDN in MS are warranted. ANN NEUROL 2010

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

[Kitty]

This is interesting. I have MS and have been on LDN for a long while now(2 years +). I'm glad they're studying it......but 8 weeks, in my opinion, isn't long enough to make a conclusion. It took about 6 months before I could pinpoint specific improvements in my life. You sort of have to look back in order to realize the improvements.

[jeanb]

I am astounded that people with MS sponsored a trial - good for them!

[reverett123]

This is great! Just imagine should this become the norm but with the patients making the decisions about the design with the scientists as consultants. Then post the proposals and solicit funds. Recruit participants, conduct, and publish.

Minimize costs by- Do everything online. Work with recent grads that have no hope of funding. Have individual patients all over the world participate with their own MDs recording standardized data.

Ideal for PD. All kinds of possibilities. A perfect example is the tetracycline thread. Thirty bucks worth of antibiotic. Another hundred or so for before and after exams. Throw in a big fudge factor and say $200 per patient. Heck, I'll pledge $200 right now. Raise funds like they used to send kids to camp ("Little Ricky can't run and play like the other kids without your help.... )

Debi- If you guys really want to break out of the box, here is the opportunity. But put a panel of PWP in charge. TOTALLY in charge. Minimal funding, just get folks to return our phone calls. And we have time to launch it at Glasgow, too.

[olsen]

and in addition, cell phones could be used to obtain continuing patient follow up/information! madelyn

[dmbkarma]

Hey Kitty, I'm about 3 years "late" to this thread, but you had mentioned at the time that you had been taking LDN for more than 2 years. With that being 3 years ago, you may have now been on it for 5 years. I was just diagnosed with MS and am considering LDN.

How are you doing? Are you still taking LDN?

Originally Posted by Kitty

This is interesting. I have MS and have been on LDN for a long while now(2 years +). I'm glad they're studying it......but 8 weeks, in my opinion, isn't long enough to make a conclusion. It took about 6 months before I could pinpoint specific improvements in my life. You sort of have to look back in order to realize the improvements.

[Kitty]

Originally Posted by dmbkarma

Hey Kitty, I'm about 3 years "late" to this thread, but you had mentioned at the time that you had been taking LDN for more than 2 years. With that being 3 years ago, you may have now been on it for 5 years. I was just diagnosed with MS and am considering LDN.

How are you doing? Are you still taking LDN?

I'm no longer taking LDN. I stopped about a year and a half ago when I had surgery (not MS related) and just never started again.

Since you now have a diagnosis of MS here's a link to the MS forum. There are several folks there that are taking LDN.

http://neurotalk.psychcentral.com/forum17.html

[wxxu]

Anyone (PwP) is taking LDN currently? There will be a radio talk show in Sunday morning about the benefits of taking LDN -

Lexie Lindstrom is the host on Sunday Connections. "I have been taking Low Dose Naltrexone, or LDN, for 5 years now and have had nothing but remarkable benefits! LDN has allowed me to titrate off of the majority of my PD medications and has given me superb symptom control. The big surprise for me has been the REVERSAL of most of my PD symptoms, including about an 85% return of my sense of smell after 24 long years! I would love to share my good news with all of you!"

https://col127.mail.live.com/default...37de417e8&fv=1

[ashleyk]

I hate to throw cold water on this but some of you may be interested in my wife's experience with LDN. I was one of the origional posters on LDN (see my posts here under ashleyk). My wife was dx with PD about 10-11 years ago at age 54, tremor dominate. My time line on all this is beginning to fade so dates are ballpark numbers. Thinking I could fix her, I began looking at drugs/treatments on line. I came across the LDN site about 10 years ago (they had initially believed she had MS). I found a Dr. S... in Pa who would write the Rx. My wife began faithfully taking an LDN capsule every night for 7 years. My belief in LDN was supported more by the research done by Dr's. Hong and Lieu at the NIH and not by the reports of people at the LDN forum.
My wife stopped taking LDN about 2-3 years ago. She said she was progressing. I was unhappy to see her stop but it's her decision to make. For the past 2 years she is about where someone with PD would be after 10 years of dx. She is on 100mg stalevo 9 a day plus 4mg neupro patch and a sinemet rescue pill when needed. She has off periods that can last for over an hour and is reluctant to eat because of this. She has lost about 30 lbs and is very thin. She has dyskinesia at the other end and can be a little pscho. She has also had a number of bad falls.
If anyone wants to follow the LDN route, you are better off using 1/2 tsp Dexthromethorphan (cough syrup), it's much cheaper and easier to get. DXM has been studied by Dr. Hong and has the same results as LDN in rats.
John