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    Neurologist suggests I quit LDN

    I saw my MS specialist, yesterday. He suggested that I quit using LDN. He thinks it may be the cause of my low lymphocytes ! He said that I am using that drug and there is not enough proof of its effectiveness. I have been taking it for about 4 years because I felt that it was helping me sleep soundly and I felt that I had some increased energy during the day. I have done blood tests, today. I didn't ask the doctor if Tecfidera could be the cause of my low blood counts. Oh well, time will tell !

    #2
    Jerry,

    That's definitely something you and your doc need to discuss. You started LDN before Tec -- if you had bloodwork before starting Tec - that would possibly show if your lymph counts were being affected at all by the LDN the prior 1 or 2 yrs.

    I don't know about LDN -- but I have been on Tec and my lymphs have steadily gone down to the point where I'm stopping Tec.

    Perhaps someone else with more experience with LDN can give their opinion.

    Good luck,
    Bree

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      #3
      Is there proof that LDN is harming you? Can he cite any proof that LDN can lower your lymphocyte counts? I can show plenty of Biogen proof that Tecfidera can lower your lymphocyte counts. It's expected for Tecfidera to reduce your lymphocyte count and this is generally desirable. Many people will have their lymphocyte counts increase over time, but for 3-6% of patients their counts will go too low. Even IF LDN was reducing your lymphocytes you had a CBC before starting Tecfidera. If your numbers were normal then and low now that would still point towards Tecfidera.

      I'm starting to like your neurologist less and less ....

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        #4
        Originally posted by Marco View Post
        I'm starting to like your neurologist less and less ....
        Why would a neurologist put a person with primary progressive MS on Tecfidera in the first place? What happened to "first do no harm"?

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          #5
          Originally posted by jreagan70 View Post
          Why would a neurologist put a person with primary progressive MS on Tecfidera in the first place? What happened to "first do no harm"?

          The last Tecfidera patient that got PML was also PPMS with 18+ months of known lymphopenia. One really has to wonder about the thought processes and judgement of some of these MS specialists.

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            #6
            Your responses are precisely the reason I posted. Thanks.

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              #7
              Jerry,

              Sorry to hear. What are you going to do then?
              Kathy
              DX 01/06, currently on Tysabri

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