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BG 12 and Primary Progressive

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    BG 12 and Primary Progressive

    Hi all- Very hopeful info re BG 12. I have been diagnosed with Primary Progressive -- any news re use of BG 12 with PPMS? Thanks!

    #2
    Anniepat,

    Haven’t heard of BG-12 being used in Primary Progressive but I would not discount the possibility. Keep an open mind and continue learning. As the saying goes… seek and you shall find.

    Best wishes for your prosperity in spirit, soul, and body.

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      #3
      thanks

      Thanks for reply. So true! Blessings, Annan

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        #4
        I have not seen anything indicating even trials for PPMS however there is currently a trial for Gilenya for PPMS. I have heard that there are positive results seen and possibly the trial will be open label soon. I believe that at that time all participants in the trial may be able to start taking Gilenya.

        I have great hopes for BG-12 because of the safety reports vs. the other meds available and I really hope it comes soon in spite of Teva's attempts to halt the approval!
        Falling down is easy... getting up not so much

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          #5
          I don’t follow research or trials for SPMS or PPMS very closely but there are some going on. There is a trial of Tysabri in SPMS. Also, there is a trial of rituximab in SPMS. The Biogen knock-off of rituximab is called ocrelizumab and that is being trialed in 630 PPMSers, if I remember right. Be sure to google for whatever information you are interested in.

          For example, google… “Trial of Idebenone in Primary Progressive Multiple Sclerosis” and you can get informed about that. Also, if you have PPMS, take a look at Dr. Gironi’s study titled “A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis” at the NIH website: http://www.ncbi.nlm.nih.gov/pubmed/18728058

          There is sure to be more studies going on than what I’ve mentioned. Oftentimes research is as simple as googling specific questions.

          Happy hunting!

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            #6
            Thanks Myoak. I check the clinical trials site every week for PPMS stuff, but didn't seen this LDN one. I take 4.5 mgs of LDN daily, with or without a trial. Good luck

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              #7
              NIH trial

              I'm in the trial for Idebenone at the NIH, for SPMS or PPMS (since we're not sure which one I have) but haven't started on anything yet since they require a year-long "look" at me. I've had many many MRIs, a lumbar puncture, etc., but they're collecting information so they understand my progression. So far, I've had only good experiences with the people at the NIH, and am hoping I get the "real thing" and not the placebo.

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