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    Finally some hope ?

    Hi all. I have been waiting 12 years for a glimmer of hope for something to help with my condition (PPMS). I'm excited and afraid at the same time. I don't know if I'm too old (57), or have had the diagnoses for too long, or don't know long term effects of this new drug , Ocrevus. I guess I do know the long term effects of having PPMS. For me it's been slow and steady decline with the aging process on top, something we can do nothing about. It has to be good or it wouldn't have gotten approved ? Should I be more excited and less afraid , or the reverse ? I have a lot of "pondering" to do, that's for sure. It doesn't sound like a cure , at least short term. Maybe long term ? I'm not much for gathering info from reports, they seem to be just a little over my head. I was just wondering what some others in my shoes were thinking ? Good ? Bad ? Indifferent ? Hopes ? Fears ? Maybe it's too early to be asking. Thanks for reading. I would love to get some comments. Has any one tried it yet? Or have it scheduled yet ? Or thoughts ?

    Richard.
    It was one agains't 2.5million toughest one we ever fought.

    #2
    Hi Ocean pride,
    I can't wait to try it. I have to wait though till it is approved in Aus.
    I have read up on it a lot and am very hopeful that it may slow my progression (spms)
    The studies say it has high efficacy with few side effects.
    I hope so.
    There is some good, easy to follow info posted in New treatments you might like to read.

    Comment


      #3
      Thank you for your thoughts. That's another thing I'm not sure of ? If it's available in Canada or just the US ? I guess I'll just find out along the way.
      It was one agains't 2.5million toughest one we ever fought.

      Comment


        #4
        Tough decisions to make on DMTs especially new ones that so few have used.
        I'm about your age and PPMS since 2009 and I've been on 4 different ones with the latest being Lemtrada.
        This site's message boards are a good source of info and reading other's experiences and thoughts.
        Best wishes.

        Comment


          #5
          I waited a long time for something to come around, approved by the FDA to treat PPMS. I was going to wait for Ocrevus, then my neurologist called me and suggested that I get the Lemtrada infusions. I did the infusions in January.
          If you are looking to find real world results, you may be able to find something on the web from the U.K. I believe that Ocrevus has been in use there for about 6 months . Good luck

          Comment


            #6
            Not taking it

            Our co insurance on this would be 30-50% so that's that, but I also fear the cancer risk in exchange for "modest" results. My daughter's been working in med research and doesn't like these immunosuppressants, nor do I. I'm in a study right now (just giving blood) but will be part of a pilot of a lipid supplementation in summer '18 to get our levels up to that of controls. This lipid is a by-product of our gut microbiome. He cured his mice. Granted I'm not a mouse and maybe this lipid kill me but seems a lot safer to just bring one particular lipid up to normal rather than tamp down part of our immune system.

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              #7
              Thanks pb909 and jerry d. I think you guys have a few more options in the US than us PPMS er's up here in Canada. Guess I'll just have to wait a little longer. I did check and it doesn't look like it's available here yet. Just hope I can hang on till there's something ! I'm losing the battle little by little and can't afford to lose too much more ground. If anyone hears anything good or bad ?? I really depend on you guys !! Thanks.
              It was one agains't 2.5million toughest one we ever fought.

              Comment


                #8
                Originally posted by Sheri View Post
                Our co insurance on this would be 30-50% so that's that, but I also fear the cancer risk in exchange for "modest" results. My daughter's been working in med research and doesn't like these immunosuppressants, nor do I. I'm in a study right now (just giving blood) but will be part of a pilot of a lipid supplementation in summer '18 to get our levels up to that of controls. This lipid is a by-product of our gut microbiome. He cured his mice. Granted I'm not a mouse and maybe this lipid kill me but seems a lot safer to just bring one particular lipid up to normal rather than tamp down part of our immune system.
                Thank you also Sheri. I do have reservations about it all that's for sure.
                It was one agains't 2.5million toughest one we ever fought.

                Comment


                  #9
                  Originally posted by oceanpride View Post
                  Hi all. I have been waiting 12 years for a glimmer of hope for something to help with my condition (PPMS). I'm excited and afraid at the same time. I don't know if I'm too old (57), or have had the diagnoses for too long, or don't know long term effects of this new drug , Ocrevus. I guess I do know the long term effects of having PPMS. For me it's been slow and steady decline with the aging process on top, something we can do nothing about. It has to be good or it wouldn't have gotten approved ? Should I be more excited and less afraid , or the reverse ? I have a lot of "pondering" to do, that's for sure. It doesn't sound like a cure , at least short term. Maybe long term ? I'm not much for gathering info from reports, they seem to be just a little over my head. I was just wondering what some others in my shoes were thinking ? Good ? Bad ? Indifferent ? Hopes ? Fears ? Maybe it's too early to be asking. Thanks for reading. I would love to get some comments. Has any one tried it yet? Or have it scheduled yet ? Or thoughts ?

                  Richard.
                  We are in the same boat except Iím newly dx. But as Iíve stated before thereís no doubt something has been ďoffĒ for years I just finally found a name to call it PPMS. Iím going to start infusions early May.

                  Comment


                    #10
                    I think that is good DonnaH.
                    I wish I could have been done 14 years ago. Might have made more of a difference back then. Iím still grateful though. Like the old guys use to tell me
                    ď a good try canít be beat ď
                    Good luck. Itís an uphill battle thatís for sure.
                    It was one agains't 2.5million toughest one we ever fought.

                    Comment


                      #11
                      Re: Oceanpride

                      I am going to start the Ocervus infusions on the 13th. I agree about the fact its been approved, but I've thought about trying anything to feel better,even if it meant something not "approved" and still in testing phase. So why not go for something that has already shown to prove itself as a milestone in treatment.

                      Originally posted by DonnaH View Post
                      We are in the same boat except Iím newly dx. But as Iíve stated before thereís no doubt something has been ďoffĒ for years I just finally found a name to call it PPMS. Iím going to start infusions early May.

                      Comment

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