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Those who take LDN for MS, what dose do you take?

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    Those who take LDN for MS, what dose do you take?

    I have MS and will be starting LDN for the first time tonight. I just stopped Tecfidera as it gave me leukopenia (severe drop in WBC) and was too toxic (also have a HUGE concern it would eventually cause cancer). For those who take LDN for MS... what dose do you take? I'm trying to see how many take 3 or 4.5mg rather than ONLY 1.5mg.

    I am VERY confused what dose would do the best job at preventing MS progression.

    How many here went off all MS drugs and are ONLY using LDN like myself?

    Thanks!

    #2
    Hi Lilly-

    I started at 3.0mg and went up to 4.5mg. I was Dx 4.12, went on Avonex for 6 months or so...hated it. Started with the LDN in January of 2013 at 3.0 and went up to 4.5 after 6 months. I like it. Cuts the spasticity I sometimes have at bedtime down to almost nothing. I sleep well and feel well upon waking.

    I wouldn't go so far as to say that it is halting MS progression - I would be more inclined to say that it is helping to dramatically slow progression.

    Besides my brief affair with the Avonex I am not on any of the traditional DMTs. I actually don't have any available....PPMS you see. So I have the LDN, lots of supplements, acupuncture, exercise, and an inordinately sunny disposition.

    Best of luck.

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      #3
      I just started so we are ramping up to 4.5 -- 1.5 for 3 days, then 3.0 for 3 days and then 4.5 going forward.

      Comment


        #4
        Missed your last question. Not applicable for me since I am PPMS and don't take DMTs.

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          #5
          Interesting, thanks for your responses it was helpful. It appears people with MS are indeed taking higher dose than 1.5mg if they tolerate it well.

          Comment


            #6
            Sorry for post stacking...

            FWIW, I am not taking it in the hopes of it slowing progression (I don't think it will, nor am I interested in debating the merits, etc.). I am taking it to see if it makes me feel better overall. If it does, great!

            Comment


              #7
              Feeling of Wellness

              My sister has been on LDN for years. First 3 mg, then 4.5mg which didn't add any additional benefit so back to 3 mg for the last year.

              There is no data available to suggest LDN arrests progression of MS. There is data on that it helps people FEEL better. There is a summary of studies on MSFOCUS.

              My sister feels better on the LDN. She says her pain and spacsicity is less with the LDN. The other side effect she experienced was some very realistic dreams when she started the medication.

              LDN can also be combined with all the DMTs available. My sister did originally start for several weeks at 1.5 mg then to 3 mg to "step-up" to the medication. It doesn't interact with any of her meds.

              There is also anecdotal evidence that the combination of cymbalta and LDN significantly helps with dealing with nerve pain. My sister added the cymbalta and believes the combo is the best "MS" drug she has ever had. It doesn't make her sick, it's cheap and it helps her FEEL better.

              Good Luck

              Comment


                #8
                Did it?

                Originally posted by misslux View Post
                Sorry for post stacking...

                FWIW, I am not taking it in the hopes of it slowing progression (I don't think it will, nor am I interested in debating the merits, etc.). I am taking it to see if it makes me feel better overall. If it does, great!
                how did it work, do you feel better, and how?

                Comment


                  #9
                  been on ldn for 14 years

                  i started at 3 mgs, but went up to 4.5 mgs and that's where i've been all but first 6 months. i remember that if the dose is not working for you going down is one of the first ways you should adjust it. opioid painkillers wont work if you take them. naltrexone is powerful.

                  Comment


                    #10
                    Originally posted by LillyMS View Post
                    I have MS and will be starting LDN for the first time tonight. I just stopped Tecfidera as it gave me leukopenia (severe drop in WBC) and was too toxic (also have a HUGE concern it would eventually cause cancer). For those who take LDN for MS... what dose do you take? I'm trying to see how many take 3 or 4.5mg rather than ONLY 1.5mg.

                    I am VERY confused what dose would do the best job at preventing MS progression.

                    How many here went off all MS drugs and are ONLY using LDN like myself?

                    Thanks!
                    I know it's an old thread, but here goes.

                    I've been on 4.5 mg for one week. Started on 3mg and worked my way up. I've been on LDN for one month. Cut out all dairy and wheat too. I feel great. Keeps the muscle spasms at bay. NO pain. Helps with my surly mood that was caused by pain, and fatigue. Fatigue is Gone. I can ride my bike in hot weather. I still get migraines, but they are tolerable, and tylenol makes them go away now.

                    In my opinion, this is a wonder drug. I will hopefully never take anything else.

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