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    Is anyone paying attention ?

    The news that Ocrelizumab appears to be in line to be the first drug to be approved to treat PPMS and there is very little chatter on this board, anywhere! Wow, am I surprised. I expected every PPMSer, here, to contribute in some way, but have read very little. What goes?

    #2
    People are waiting

    Originally posted by JerryD View Post
    The news that Ocrelizumab appears to be in line to be the first drug to be approved to treat PPMS and there is very little chatter on this board, anywhere! Wow, am I surprised. I expected every PPMSer, here, to contribute in some way, but have read very little. What goes?
    Hi,Jerry. I think most people have a "show me it works and then I'll get excited" attitude.

    I've been singing the praises of LDN and healthy diet because they're working for me, and I'm sure others will sing about Ocrelizumab if it works for them.

    I'm more likely to believe anecdotal evidence from sufferers than data from big pharmacy.

    Check out "info on Naltrexone" on the "treatment..." thread and let me know what you think. Rand

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      #3
      Rand, I was on LDN 4.5 mgs for about 3 years. My current MS 'specialist' saw a problem with my blood levels and suggested that I discontinue it. I am following his counsel. I hope he is right. I read everything on the web about LDN before I started on it. Since then, much more info has been added. Thanks for responding. Good luck

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        #4
        I'm half paying attention. Watching the here-and-now approved treatments more closely.

        I'm now on Lemtrada after being on Aubagio and Tysabri. I'm trying to slow down by disability progression as soon as possible.

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          #5
          I am paying attention, however it is always been my thinking that MS is a great place for pharmacists to try out drugs.

          Since with MS there will always be remitting/relapsing they can always claim their drug was responsible for it.

          Sound like a pessimist? I guess I am, but until I see a real cure, I won't be taking any drugs..

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            #6
            JerryD

            I was excited about Ocrelizumab (for a minute) until I researched it.

            In one of the articles, it said that the drug was originally supposed to be a blockbuster treatment for rheumatoid arthritis and lupus. But in early 2010, treatment was suspended for RA and Lupus due to serious and opportunistic infections, several of which were fatal.

            The article went on to say that Ocrelizumab may remain a viable candidate for MS, however, given that serious infection is an acceptable risk in the MS population.

            Another article stated that researchers didn't close the curtain entirely on Ocrelizumab, as they continued a trial for MS, where the appetite for risk is distinctly larger.

            On the other hand, maybe it's safer now? You never know.
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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              #7
              I read something about serious infections and fatalities. It may be that some think this is acceptable but I am not going to believe anything until the FDA approval next year. Hope springs eternal !

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                #8
                Originally posted by JerryD View Post
                I read something about serious infections and fatalities. It may be that some think this is acceptable but I am not going to believe anything until the FDA approval next year. Hope springs eternal !
                Yes (about hope) - having hope sure feels a lot better than hopeless.
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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                  #9
                  Hope is a wonderful thing, I keep picturing some guy or gal in a laboratory bending over the work table. Suddenly they jump up and shout" I found the cell that creates M.S..........Now onward to locate the "Cure!"

                  Hope springs eternal!

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                    #10
                    Cautiously Optimistic

                    Watching and researching carefully. It would be nice to have an FDA approved med for PPMS
                    Mary

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