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The end of another year ! Ho Hum!!

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    The end of another year ! Ho Hum!!

    So another year is ending and, still, no new treatments approved for 'progressive' MS! Surprise ! Same old story ! What happened to the 'great' Ocrelizumab' ? Big talk ! No action ! The Monkees once had a song with these lyrics ! ' Too much talk, not enough action...' ! Something has to be going on. But what ?

    #2
    Oh JerryD! Was just checking in after a long time away from the board and glad to see that you are still keeping up that positive attitude! Maybe give HSCT a try...I am. Or you could look into Rituxan. It is pretty much the sister drug of Ocrevus. You may be able to get it for free is you make under 125k. I would ask you neuro about it.

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      #3
      Thanks for the response! I waited long enough and had the Lemtrada infusions in January, this year. it's end of March 2017 and there is still no realistic treatment for 'progressive' MS. Maybe, some day !

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        #4
        Jerrys diet

        New to this group and not sure how to private message a member. Saw in another thread that Jerry tried the Wahls diet or maybe protocol several yrs back. I'm debating trying a diet but have no interest in just making my life MORE complicated if I can avoid it. So I've got Wahls anecdotal experience. Can I have Jerrys?

        I take d, fish oil, flax seed oil, b12. My neuro says might be worth trying wheat-free and dairy-free.

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          #5
          Hi Sheri. I don't know how to private message anyone but I will say that I have adjusted my diet because I have noticed that 'diet' has been studied to treat MS for many years. I am interested in the Wahls diet but I don't know enough about it to actually follow it . I believe that Dr. Wahls' protocol does work as a treatment regimen . If you get her book and you can make a plan using the information from it, go for it. Good luck

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            #6
            Hi Jerry, I just saw on the news that the FDA has approved a new drug for PPMS. I wish I kept the name but google, I'm sure you'll find it.

            Good luck!
            Jen
            RRMS 2005, Copaxone since 2007
            "I hope to be the person my dog thinks I am."

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              #7
              Thanks CatMom, I've been watching! I couldn't wait any longer ! I did Lemtrada (off label). Now, I wonder what magic Ocrelizumab has in store for the PPMSer's.

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                #8
                PPMSers and Ocrelizumab...Anyone?

                Originally posted by JerryD View Post
                Thanks CatMom, I've been watching! I couldn't wait any longer ! I did Lemtrada (off label). Now, I wonder what magic Ocrelizumab has in store for the PPMSer's.
                I was looking for this topic somewhere. Ocrelizumab is just like the rest of 'em. How do we know if there is any magic when there are no relapses to "count" as we have PPMS? In the past, most doctors wouldn't stop a PPMS patient from trying the same stuff as an RRMS patient (and as such, are very careful with labling us with PPMS. I was only a "RRMS" on paper...kind of with a wink and a nod so no insurance company would balk at me trying a drug that had mechanisms that may help a person with PPMS. PPMs numerical data is pretty elusive.

                I am not on any DMTs, and oddly, you think my doctor would have discussed Ocrelizumab to me last appointment, but he didn't. Perhaps even Ocrelizumab at it's best wouldn't do much more for me. After all, I am still mobile, driving (but alas, fatigue from hell the whole time no matter what I have tried) and that looks pretty good for a PPMSer after probably 20 years since I first knew something was off, although officially, 14 years.
                Tawanda
                ___________________________________________
                Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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                  #9
                  I was excited about Ocrevus when it first came out. The doctors were not ever promoting it as a wonder drug and I was hoping that once a number of patients took it, that the reports would be better than expected. Iím not on face book or anything so I get all my MS info here and Iím just not seeing any thing to get excited about. As far as Iím concerned itís another let down. Iím just losing any hope of getting anything that will help. The only thing now that I can hope for is that I wonít get much worse . Maybe plateau , hold my own so to speak. Iím sure that if there was something , it would be causing a stir on here. Just donít see it. Maybe Iím missing something ??? Maybe not taking anything is the best for me. Who knows ???
                  It was one agains't 2.5million toughest one we ever fought.

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                    #10
                    Neuro is cautious

                    My Neuro mentioned it and said, "We'll see". Being JCV+ and having PRMS (wink) he is waiting to see if PML pops up like it did with Tecfidera.

                    At this point we are treating symptoms and charting progression.

                    Peace,
                    Anna

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