Don't know what dose to start with in my situation...

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis
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LillyMS
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Posts: 8
Joined: Wed Apr 02, 2014 2:23 pm

Don't know what dose to start with in my situation...

Post by LillyMS »

Hoping someone can please advise. I've had RMMS for 12 yrs and am asymptomatic, no fatigue or any problems thank goodness!!! ... but I had horrible amount of lesions (huge progression in my MRI scans) which have been stable past 2 yrs. I am very athletic go jogging etc daily. I was on tecfidera and had to go off it. It is too toxic of a drug. Thus, I will now be going on LDN and staying on the vegan diet being the Dr John McDougall (very similar to Dr Roy Swank)

QUESTION: I am VERY confused what dose to start with. Given the above info, what would you guys suggest? I am worried that starting with a 1.5mg dose will be too small to make a any difference and perhaps best to start larger dose?

IMPORTANT: Now that I am no taking MS drugs, I need to ensure I do everything possible to make LDN effective as possible. It looks like I will be using the liquid form because I do NOT want to consume any gelatin.

Thanks.
emktrx
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Posts: 2
Joined: Fri Apr 04, 2014 11:40 am

Re: Don't know what dose to start with in my situation...

Post by emktrx »

What I have read about Naltrexone pros and cons:

It is approved by the FDA for alcholism and opiate withdrawal (350 mg) only.

However, unfortunately no phase III clinical trials have been done on Naltrexone being a cure for MS. Clinical trials in general have been small and limited as improving and relieving symptoms of MS as far as pain and mobility. Studies are varied, i.e, Complex Regional Pain Syndrome, fibromyalgia. Forums on the Internet regarding Naltrexone have had patients stating excellent outcomes especially those with PPMS. Certain forums have even stated that lesions decreased on MR scans.

Before starting any new medication, I would strongly recommend asking your Neurologist his opinions and recommendations especially since you have had no flare-ups, exacerbations or progression of your disability.

In our case, my husband has primary progressive MS for the last three years with unremiting pain and neuropathy and progressing ambulatory dysfunction relying heavily on a 4 prong cane. We have decided with our neurologist's approval and with the neurologist following him closely (i.e., LFTs bloodwork as Rx can cause transient and/or elevated liver enzymes) to start LDN (5 mg) daily.

I will keep you informed of the outcomes! My prayers and best wishes on your continued success and great managment of your MS!
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