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    #16
    Hello Reg53,

    Keep your chin up because you are on a very effective medicine. Serious infections have been rare, so far, and they may stay that way.

    Data will be collected and if a change is warranted, it will happen.

    Remember, long-term use on 6-month dosing may see a rise in concerns which are unlikely with short and/or intermediate term usage.

    By the time most would fall into the long-term use category data should inform us more clearly if testing by blood marker is superior or inferior to infusing every 6 months.

    Do let your heart and mind be at peace. You are on a very effective medicine and one that is a wise choice, IMO.

    Thank you, 505E79 for your kind expressions!

    Thank you Seasha and KoKo for your generous words and for all the time and effort you spend to make this site work. Thank you!

    Comment


      #17
      Myoak, Thank you for your kind words.

      I did talk to my neuro about this my last visit. He doesn't do
      it because there isn't enough data. How will data be collected? Is there a study going on how?
      God Bless Us All

      Comment


        #18
        Originally posted by REG53 View Post
        Myoak, Thank you for your kind words.

        I did talk to my neuro about this my last visit. He doesn't do
        it because there isn't enough data. How will data be collected? Is there a study going on how?
        It will take a researcher, or team of researchers, to mine this data. Someone will have to fund the effort. I do know that the team at Bart's in London is presently attempting to organize such a study.

        You might expect the company making the drug would fund the study but I would be surprised. It is not in their financial interest, at this point. But it may be later on if 6 month dosing presents health risks which could have been avoided by dosing via blood markers.

        Clearly, there are neuros who are very interested in dosing according to blood markers and have responded to patients who wish to get infused based on those markers. So, data will exist. But it will have to be mined.

        Another possibility for data may be Sweden. They have national health and a national registry and the Swedes presented the first data regarding dose extension on Tysabri. They may lead again on this one, time will tell.

        Again, please realize what years are the most concerning... and those are 6 and 7 years and beyond on the drug. Rituximab affects the same cells as this drug and those are the years where some serious problems surfaced in some people, but certainly not in everyone.

        IMO, I it was probably a mistake in this household switching from Tysabri. But as you now realize a JCV+ positive person going off Ty will not easily be put back on it; winning the lottery would have about as much chance, IMO.

        Therefore, I need to make the most of this med. I can get obsessive about these issues and press hard for what I believe is best, but I feel I must to secure the best health care possible for my household. And, for whatever good may come to others from posting about it.

        I bet, by the time you and most have been on this DMT 6 or 7 years, data will have emerged informing us the best way forward.

        Best wishes!

        PS... In case you are wondering people on Ocr usually repopulate the B-cells at issue anywhere from 6 to 42 months with the average around 15 months. Just know it is a different period of time for each person.

        Also, it has not been established that MS would be held in check, made better or worse, dosing by blood markers compared to 6 month dosing. Obviously, I believe it is likely MS will be held in check and overall health will be better dosing by markers but that is only an educated GUESS.

        The basis for my belief is that more of the immune system is left intact by less of the drug. How can that not be better? The question to be answered is... will MS be as controlled with less of the drug? If those B-cells remain diminished, I bet MS will, too. But it is a guess!

        Yep, we need data to inform us. It will come in time. The issues we are talking about are years ahead, IMO, of most discussions regarding this med so we have to be patient. But I believe talking about it advances the timeline, a little, anyway.

        Already, your neuro notes your interest. The more people who want to know something, the more likely it will get studied. Best!

        Comment


          #19
          Thank you so much Myoak.
          God Bless Us All

          Comment


            #20
            Originally posted by REG53 View Post
            Thank you so much Myoak.
            You are very welcome.

            May I clarify something for those who are interested? Ocrevus depletes B-cells, most notably, CD20 B-cells. But on your blood test results you will find CD19 listed, not CD20, because CD19 can presently be tested but not CD20. On your blood test CD19 is used to inform about CD20. Often, I don't mention CD20 because it does not appear on blood work results although that it is extremely important. Doctors and patients get a read on CD20 from CD19 which does appear on blood test results.

            Also, please understand that Ocrevus can deplete selected B-cells for 5 or 6 half-lives which are 30 days per half-life so infusing every 6 months likely keeps the immune system permanently suppressed therefore increasing the risk of infections over time, especially probable of appearing in the long-term, and by long-term I mean around 6 years. I believe that because an increase of infections at 6 and 7 years has been noted in other, similar B-cell depleters.

            Ocrevus exhibits a good deal more immune suppression in depleting certain B-cells than most other MS DMTs. However, Ocrevus is also a great deal more effective against MS than most, but not all, other MS DMTs.

            MS is a wicked disease with DMTs which present a constant challenge in balancing pluses and minuses.

            Best wishes!

            Comment


              #21
              Myoak ,

              Originally posted by Myoak View Post
              You are very welcome.

              May I clarify something for those who are interested? Ocrevus depletes B-cells, most notably, CD20 B-cells. But on your blood test results you will find CD19 listed, not CD20, because CD19 can presently be tested but not CD20. On your blood test CD19 is used to inform about CD20. Often, I don't mention CD20 because it does not appear on blood work results although that it is extremely important. Doctors and patients get a read on CD20 from CD19 which does appear on blood test results.

              Also, please understand that Ocrevus can deplete selected B-cells for 5 or 6 half-lives which are 30 days per half-life so infusing every 6 months likely keeps the immune system permanently suppressed therefore increasing the risk of infections over time, especially probable of appearing in the long-term, and by long-term I mean around 6 years. I believe that because an increase of infections at 6 and 7 years has been noted in other, similar B-cell depleters.

              Ocrevus exhibits a good deal more immune suppression in depleting certain B-cells than most other MS DMTs. However, Ocrevus is also a great deal more effective against MS than most, but not all, other MS DMTs.

              MS is a wicked disease with DMTs which present a constant challenge in balancing pluses and minuses.

              Best wishes!
              My oak,
              Your wife is so very lucky to have someone so diligent doing so much research on her behalf.
              We all appreciate the time you take to give us this useful information.

              Comment


                #22
                Hello KittyCoCo!

                You are so welcome!

                I, too, am grateful for those who take the time to share things they have learned about MS and MS DMTs. It may sound old-fashioned but the internet has made possible a tremendous increase in knowledge, sharing that knowledge, and caring about those with whom we share; which, in my mind, is the very essence of life connecting us intimately with one another in the most profound ways right where we live and breathe.

                Thank you for your kind expressions, KittyCoCo. You are always supportive and encouraging. I get much strength from you!

                Comment

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