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    #16
    Originally posted by palmtree View Post

    So everything is left until I see main neuro in September. I still donít know what to do. Still think the blood pressure factor was the problem. I love this site because we learn so much more from each other than many healthcare providers.
    I second that underlined part.

    Palmtree, if the administration of the DMT is a problem, isnít that a legit reason for you to switch? And as the patient, isnít the choice ultimately yours, if you feel that strongly about it? I am sending you peace and good luck in your effort.

    Originally posted by palmtree View Post
    My neurologist says the PML risk with Ocrevus is probably as high as Tysabri because both lower the immune system significantly, which is what creates the PML risk.
    I wanted to add to what you said there, for anyone considering one of these two highly effective treatments. These comments are based on my reading and clarifications from my neurologist (put into laymanís terms).

    My neuro says Tysabri does not really suppress your overall immunity that much. Rather, it focuses very specifically on two essential areas: the Central Nervous System (CNS) and gut. To prevent attacks on the Central Nervous System that happen in MS, Tysabri alters the ďshapeĒ of certain immune cells. Like square pegs trying to enter a round hole, the immune cells can no longer get through the ďgateĒ to the brain and spinal cord and attack neural pathways, causing the inflammatory damage found in MS. The immune cells are only blocked from the CNS and parts of the gut. They continue to defend other parts of the body.

    BUT WITH PML,
    because immune cells are locked out of the CNS, they arenít there to defend the brain against PML. This is why long term usage of Tysabri could make you more vulnerable to PML if you are not monitored regularly for JCV, which always seems to be present in cases of PML. This includes the one person in Germany who developed PML on Ocrevus (after being on Tysabri for 3 years). That person was JCV positive.

    So if, during routine JCV testing offered for free to everyone who is taking Tysabri, your JCV count goes up, your doctor should take additional steps to protect the patient. This includes extending the interval between doses, other types of monitoring, or if really needed, stopping Tysabri.

    There is no question - Tysabri is powerful and potentially dangerous like other immune suppressants, but because routine testing for JCV is available for free to anyone on Tysabri, my concern as a patient is actually more about taking good care of my liver. Control what we can?

    Sorry for this detour and for repeating information you may already know. I continue to send supportive vibes as you make your decision about switching
    All the best, ~G

    Comment


      #17
      I do agree with G. It is your choice what med you are on. Unless there is a true medical reason why they are ruling out Ocrevus, it is your choice on how much risk you are willing to accept. They can and should advise of the risks and communicate their preference for medication, but you should have the decision.

      Hope your OV in September is informative for you.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #18
        Pennstater,

        Fascinating explanation on the way Tysabri works! Like I said we learn so much from each other and each otherís neurologist.

        The switch is up to me but I really donít know what I want to do. For me, the scariest risk is MS progression. It is already getting so so hard to walk and lately my hands are showing signs of paralysis. If I had a crystal ball it would be useful right now. Tysabri and Ocrevus have almost the same efficacy.the fact that Ocrevus helps PPMS makes me wonder if it might be helpful for SPMS.

        The mechanisms are so different. What I wish was to see if I could try Ocrevus for a year and go back to Ty if I didnít think it was helpful. But this NP said the decision is a one way ticket. If I get a flair on Ocrevus the only thing left is Lemtrada.

        So things are as clear as mud. One thing I have decided is not to make any changes until the fall. I have a superstition about August (for many good reasons). I guess you could call this deciding not to decide.

        Comment


          #19
          Originally posted by palmtree View Post
          So things are as clear as mud. One thing I have decided is not to make any changes until the fall. I have a superstition about August (for many good reasons). I guess you could call this deciding not to decide.
          A mentor of mine once told me, Ēsometimes doing nothing is doing something.Ē I think you are making a wise decision by continuing to communicate with your doctors about it and taking it one step at a time.
          All the best, ~G

          Comment


            #20
            The weather has been cooler the past couple of days and life is good. When I look at the posts I made earlier this summer I see how much stress the heat puts on me.

            What I failed to mention was how terrific the Nurse Practicioner was. She told me she had worked at the hospital in the line access department. She said, ďdonít worry about line access we can do anything you wantĒ.

            There was mention of the protocol of the JC test. I tell my providers I do not want the JC test and I tell them exactly why. The statistics show that if the JC titer number reaches a certain point there is 30% chance of developing PML. But there is part of the statistic that is overlooked. The 30% rate of PML cases is within the group that is also on long term steroids like prednisone for asthma or arthritis. There is no statistic for the group who is JC positive and not on steady steroid doses, which is most of us.

            Then, if I follow the protocol and the JC test is positive what are my choices? One of my doctors said it really well. He said, do we have anything as effective as Tysabri? The answer is, we donít.

            That was before Ocrevus. Since it has the same efficacy as Tysabri everyone is jumping on the bandwagon. But the NP and my neuro believe not enough time has passed for us to know what risks, if any, there are. The NP says Tysabri is a long term tried and true safe treatment in spite of the PML risks. That is something few people say.

            It was really interesting to hear the explanation that Pennestar contributed about the way Tysabri functions. The only thing I had heard before was that it prevents the disease from crossing the blood brain barrier.

            As far as suppressing the immune system, my experience is that it has been significant. I started Tysabri in August 2010. By October my jaw bone was infected. Plenty of UTIs. If I had to count I would say over 100(shoot! Iím struggling to finish this because of the spasticity in my fingers). Some of the UTIs were life threatening where I was in the hospital 10 days in a state of complete amnesia. Once, someone found me not breathing. I had a little cold and the next day pneumonia. It took over a week before I regained consciousness and then I was having bizarre delusions.

            The next infection was when my left ear swelled up like an elephant ear. IV antibiotics cleared it up. One cold sent me to the hospital because it turned to bronchitis immediately. Then, another case of pneumonia. Then, I accidentally burned part of my right upper arm from the steam of a tea kettle. It was over New Years so I thought the 102 fever was just the flu. Byt finally called 911 and got it diagnosed as a staph infection.

            That should be enough but on August 1, 2019 I went swimming in the river that runs through our town. I lost my balance as I was getting out and broke one of my toes. Got that fixed up but a week later the toe had swollen up twice itís normal size. Today I just finished the antibiotics for that.

            So it seems that since I started Tysabri every little microbe that succeeds at entering my body develops into a serious infection. My immune system was normal before I started the infusions and I donít have HIV. I donít know if anyone else has had a lot of infections from Tysabri but this has been my experience.

            Monday is the day for my next infusion. To have veins or to not have veins, that is the question.

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