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Here’s how not to be an idiot (like me)

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    #16
    Hello Mable,

    Why did Giavononni wait to tell a patient that brain loss volume leads to disability?

    I have no idea; I can only speculate. But I congratulate him for talking about it now. His website has a monthly Q & A section where that question can be asked.

    Brain atrophy as a clinical endpoint in DMT trials has only been introduced in the last few years. Before recently not much attention was given brain loss volume. Unlikely that many neuros have discussed it with their patients, unfortunately.

    However, going forward I believe brain atrophy will be discussed in the context of which DMT to choose; it is just now beginning to be recognized as a vitally important factor relative to disability.

    Gilenya is better at reducing brain loss volume (BLV) than most DMTs although I personally would not choose Gilenya if I had MS. But the particular patient mentioned was NEDA on it, Mable, so for her it was/is effective.

    All the other DMTs for MS are worse than Gilenya in reducing BLV except those Giavononni listed … HSCT and Lemtrada 0.2-0.25%, Tysabri 0.25-0.3%, Ocrevus 0.35%, Gilenya at 0.4%.

    So, what should this patient on Gilenya be taking instead of Gilenya? That is a tough question because she is NEDA on it and her response to the others cannot be precisely predicted. With DMTs there are patients who develop neutralizing antibodies which render a DMT useless or even counterproductive.

    HSCT is not widely available even though, IMO it is clearly the most successful DMT. Next on my list is Tysabri; not Lemtrada even though some do very, very well on Lemtrada. With Lemtrada most people (but not all) will battle significant secondary immunity problems. That is why Lemtrada gives me pause.

    With those thoughts in mind, Tysabri would be my choice whether I was JCV positive, or negative. Before going on dose extension with Tysabri (btw, convincing the neuro literally nearly took fist-fighting; our arguments were that intense, he finally caved, learned, or something and agreed that dose extension de-risks for PML. The lesson here is that sometimes you actually have to fight or change doctors for what you are convinced of, as Linda explained in her post) and before switching to Ocrevus my spouse had received more infusions of Tysabri than anyone in the world according to her neurologist. Ocrevus is a very, very good DMT but not quite as effective as Tysabri in reducing fatigue and BLV.

    The PML aspect often scares patients away from Tysabri when MS progression should be leading MSers toward Tysabri, IMO.

    IMO, HSCT is the best option. But if HSCT is not available, Tysabri is the next best, IMO.
    Please keep in mind not every DMT works well for every patient.

    My opinion is based on experience in my household and results found in DMT trial and real-world data.

    Isn’t it fun choosing a DMT? It would challenge Solomon. Choices can be narrowed down by prioritizing what is most important to an individual but it still can seem like a crap shoot.

    Good luck and certainly, you have my best wishes!

    Oh, one last point… we all lose brain volume as we age. In one scientific study the BLV per year was “0.20% at the age of 35 years increasing to 0.52% at 70 years” in healthy subjects. Often, BLV in MS is listed at 0.7% and higher. So, the best DMTs get that rate at very near normal. Recall even Gilenya was at 0.4%.

    In the near future, BLV will be used as a marker for how well a DMT is doing for a particular patient, I’m certain.

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      #17
      Originally posted by Mamabug View Post
      I'm scared to go off Copaxone. During the first 2 years of MS, I was undiagnosed, so I wasn't on anything. The next five years, I was on Betaseron, but it was fairly ineffective for me; I had regular (once or twice a year) flares that were pretty severe.

      After switching doctors, I went on Copaxone, which has worked much better for me. MS meds are supposed to reduce fx and severity of flares. Copaxone has definitely done that for me. They are also supposed to delay progression. My MS Specialist tells me that, the way meds delay progression is by reducing fx and symptoms in early years, so that, in later years, there are fewer existing lesions to "progress". Unfortunately, the first seven years, prior to Copaxone, I accumulated a lot of lesions.

      I'm currently moving from RRMS into SPMS. At some point, I suspect that my MS Specialist might be ready to take me off Copaxone. The thought of going off scares me; I don't want to go back to how things were in the past.
      If your doctor wants you to go off copaxone that doesn’t mean you have to go back to the way things were. I am SPMS and have been stable on Tysabri for 9 years. Both Tysabri and Ocrevus are wonderful options. PML is scary but the statistics are manipulated to inflate the risk and cause fear. Since the risk of MS progression is 100% I will risk PML.

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        #18
        I don't think it was a stupid gamble. And I'm not saying that to make you feel better (but I hope it does). I got the diagnosis in mid 2000's. After 8 or 9 years of no changes on MRI and no increase in physical symptoms, I stopped taking Copaxone (in my early 50's). I've been stable since. The MRIs haven't changed. My symptoms are primarily heat related and recal/short-term memory issues now.

        I took the gamble you did. You don't know that you wouldn't have had new lesions even on the med you were taking the same way I will never know if the drug I took prevented new lesions or not. The statistics speak to the group and never to an individual. We use the stats to go with the odds. But how each of us will do will be what it is.

        FWIW, the doc approved stopping the med because of my age and good MRIs. So, chances are that if you had discussed it with a doc, there's a good chance that she would have approved the gamble until an MRI said different. So you're good. What you did on your own is what I did with my doc. 🙂



        Originally posted by Mable View Post
        At the age of 50, I was Dx with RRMS. Started Copaxone and had no further disease activity. That was 7 years ago.

        For a variety of what I thought were very sound reasons, I went off my DMD last year. It was a mild one. Just learned today I have 4 new lesions—including one on my brainstem.

        No symptoms (well maybe one), but feeling really really dumb. Stupid gamble. Going forward, I’m just going to do what my doctor says.

        Comment


          #19
          Originally posted by palmtree View Post
          If your doctor wants you to go off copaxone that doesn’t mean you have to go back to the way things were. I am SPMS and have been stable on Tysabri for 9 years. Both Tysabri and Ocrevus are wonderful options. PML is scary but the statistics are manipulated to inflate the risk and cause fear. Since the risk of MS progression is 100% I will risk PML.
          Maybe I should have worded my statement differently. I'd be worried about going off DMD's; not specifically copaxone.

          I'm aware that there are other DMD's out there. This thread is about going off DMD's as we age, not about substituting one for another.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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