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LDN: who offered it to you.. how's it helping?

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    LDN: who offered it to you.. how's it helping?

    HI folks,

    Just wondering when you could be taking LDN??
    And how has it helped you?

    I am not considering DMD shots cuz of my complicating medical hx. But am considering LDN. "forgot" to mention it to my doc who is not pusing DMD shots on me.

    When should I mention this to her?

    Thanks folks..hope you are all doing ok today

    Jan
    I believe in miracles~!
    2004 Benign MS 2008 NOT MS
    Finally DX: RR MS 02.24.10

    #2
    Hey Jan,

    Nobody offered LDN to me. I first heard about it on the MS forums and then did my own research with a little help from others. I brought it up with my GP and he said to give him some info. I printed out a bunch of stuff and added my own comments,.

    GP read it over, asked me how many mg. I wanted to start with, I found a nearby compounding pharmacy and off I went.

    I started taking it more as a hedge against progression but was thrilled to find out that it completely took away my heat intolerance. I believe I have more energy as well but that could be because I'm not constantly being drained if I get overheated. I don't know if it was the LDN or not, but I'd been having trouble with a dry eye for over a year and that resolved not too long after I started taking it.

    LDN has not made any difference to my sensory changes but those are minor. My worst symptom was the heat intolerance.

    Have you checked out the LDN websites? There are several good ones where I got my info. Just Google LDN.

    C

    Comment


      #3
      So.. I take it LDN is approved now?

      And..do insurance pay for any of it?

      Thx Jan
      I believe in miracles~!
      2004 Benign MS 2008 NOT MS
      Finally DX: RR MS 02.24.10

      Comment


        #4
        Nobody offered it to me, either. I did an end run around my PCP and Neurologist and got my prescription from my Psychopharmacologist (M.D. Psychiatrist with a specialty in psychotropic medications) because LDN improves mood and I have treatment-resistant clinical depression.

        LDN did in fact help with the low mood, cognition, and energy level. It also dramatically improved my bladder problems.

        Sadly, I'm one of the very rare individuals who develops an allergic reaction to LDN (hives), so I can no longer take it. (And no, for any LDN-savvy people reading this, it wasn't a reaction to the filler in the capsules.)

        I hope you can find a good source for yourself. Definitely check out the LDN websites for tips.

        Comment


          #5
          LDN is FDA approved at a much higher dosage for getting people off opiates. I believe it's called an opiate antagonist or something like that. We take a tiny dose to only temporarily block endorphin production which then causes an increase in endorphin production later on. If you are on drugs like morphine, you can't take LDN.

          It is covered by our extended health benefits thru' DH's work, but I'm in Canada - I don't know about the US drug plans.

          C

          Comment


            #6
            I think LDN should be the first drug tried upon MS diagnosis and user experiences indicate it is more effective at preventing exacerbations than the CRABs.

            In the UK, where for-profit medicine and insurance do not distort the health marketplace, LDN is widely prescribed. If you go to www.LDNaware.org and click on the UK page you will find just about every MS organization supports LDN.

            Under the USA page all the major LDN websites are listed but no MS organizations because there is no money to be made in LDN. Despite 1000s of MSers who take LDN with good results, the NMSS refuses to support any meaningful LDN research because it would offend their big pharma sponsors. It's very troubling.

            Comment


              #7
              Originally posted by mjan View Post
              So.. I take it LDN is approved now?

              And..do insurance pay for any of it?

              Thx Jan
              No, LDN is not approved for MS, and insurance does not pay for any of it. The doctors who prescribe it do so "off-label," which is an accepted practice in the medical community for many drugs that are approved for uses other than the one they're prescribed for.

              On the other hand, LDN is very inexpensive, so paying for it out-of-pocket is doable.

              Comment


                #8
                knuckle, thanks for posting that link. The information got me thinking, since LDN works by increasing endorphins, should MS patients avoid opiods for pain if at all possible--would daily use of (syntehetic) opiods decrease our already low levels of endorphins by the reverse of this same mechanism? Food for thought at least, and way beyond my understanding of things at this point.

                There's a link off the LDN website for finding a doctor familiar with LDN treatment, there is not many on there but you may get lucky depending on where you live:
                http://www.ldnscience.org/find-a-doctor/search

                Comment


                  #9
                  Hello Jan

                  I've been trying to convince my neuro to let me try LDN for a couple of years now. He is not a very flexible doctor. I took alot of info to him about the benefits of LDN, and he said it's just anecdotal.

                  When I asked him once again at my most recent appointment, he made a deal. He said if I contact the Mellen Center for MS in Cleveland, and they say it has been tried on MS patients and has shown to be beneficial, then he will prescribe it. (Why can't he or his office do that?)

                  I've gone on the Mellen Center website, and haven't found anything about LDN there. I am disappointed because I really want to try it. I'm pretty sure I've read that it is relatively safe and inexpensive.

                  I'll try again next time.

                  Good luck to you

                  Take care,
                  KoKo
                  PPMS for 23 years (dx 1998)
                  ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                  Comment


                    #10
                    Very Few Neuros will approve LDN

                    My GP wouldn't prescribe it. My neuro knew of it but would not prescribe it. He's not sure it's effective. He worries that LDN might interfer with DMD. I came to LDN on my own after being very disappointed with Avonex. Yes, the evidence is antidotal but there is just so much of it. I HAD to give it a try. Lately though I've been getting a rash on my arms...like hives. I hope I'm not allergic to LDN. Don't know how to find out except to stop taking it for a while and see if the rash goes away. I will call Dr Sullivan and ask.
                    [I]Tellnhelen
                    Progressive Relapsing MS

                    Comment


                      #11
                      I started taking LDN due to the good words I heard about it here. My physician had no problem with me trying it.

                      I ordered it from Skip's Pharmacy as others have as well.

                      I felt wonderful on it. But when I increased the dosage from 1.5mg to 3mg, I noticed spasticity. Well, to be truthful, I hadn't even known what spasticity was before that so I have to ask. Anyway, then I increased to 4.5mg and the spasticity was really bad.

                      I ended up stopping taking it. . . after ordering it in the 4.5mg dose. We were going on a trip out the country and I didn't want to be messing with meds.

                      So now I may begin again because it did make me feel good (emotionally). But I will start at the 1.5mg level again and take it slow.

                      Comment


                        #12
                        Originally posted by Loved View Post
                        I started taking LDN due to the good words I heard about it here. My physician had no problem with me trying it.

                        I ordered it from Skip's Pharmacy as others have as well.

                        I felt wonderful on it. But when I increased the dosage from 1.5mg to 3mg, I noticed spasticity. Well, to be truthful, I hadn't even known what spasticity was before that so I have to ask. Anyway, then I increased to 4.5mg and the spasticity was really bad.

                        I ended up stopping taking it. . . after ordering it in the 4.5mg dose. We were going on a trip out the country and I didn't want to be messing with meds.

                        So now I may begin again because it did make me feel good (emotionally). But I will start at the 1.5mg level again and take it slow.
                        Some people (women, usually) find they need to just stay at 1.5 mg and not go any higher. I'd suggest you restart at 1.5 mg, stay there for a good month, then try going up .5 mg at a time, very slowly.

                        I believe Dr. Bihari (who did the pioneering work with LDN) said 1.5 mg was the lowest effective dose, so if you can't get above that you're still getting beneficial effects.

                        Comment


                          #13
                          I have a very open minded neuro. I did my own research after reading a lot about it on this site. I brought it up to him and he had no problem giving me a script for it as he already had other patients on it. I don't understand why any neuro wouldn't let their patients at least try a med thats worked well for other people.

                          I've been taking 3 mg for 6 months and found that I sleep much better than I used to. It's hard to say if it's helped with MS symptoms at this point as I started taking copaxone at the same time. Obviously if you sleep better it helps with energy levels during the day. The only thing as far as side effect was vivid dreaming for the first couple months.

                          I'd suggest giving it a try. It's cheap enough, I spend $85 for a 3 month supply.

                          Don
                          Diagnosed '79 @ age 22. SPMS since '03. Betaseron 4 yrs., Avonex 6 yrs., Tysabri 3 yrs., Present Copaxone & LDN since 1/2010.

                          Comment


                            #14
                            Originally posted by Sequoia View Post
                            Some people (women, usually) find they need to just stay at 1.5 mg and not go any higher. I'd suggest you restart at 1.5 mg, stay there for a good month, then try going up .5 mg at a time, very slowly.

                            I believe Dr. Bihari (who did the pioneering work with LDN) said 1.5 mg was the lowest effective dose, so if you can't get above that you're still getting beneficial effects.
                            Thanks, Sequoia. I did stay at 1.5 for I think 3 weeks but thought I needed to get up to 4.5 for effectiveness. So I'm glad to hear that for women perhaps the 1.5 dose will make a difference. I will begin again.

                            I certainly had none of the bad dreams that others mentioned. But I do think it contributed to sleeplessness which is a problem for me anyway. But I get lots of reading done while awake in the night so I am accomplishing something.

                            Comment


                              #15
                              Originally posted by davmets1 View Post
                              The only thing as far as side effect was vivid dreaming for the first couple months.

                              I'd suggest giving it a try. It's cheap enough, I spend $85 for a 3 month supply.

                              Don
                              Vivid dreams, for me at least, are an awesome side effect to have! And $85 for 3 months isn't too bad. I'll have to talk to my GP see what he has to say.
                              When you come to the end of your rope, tie a knot and hang on. ~FDR

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