Originally posted by ru4cats
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First, it is interesting that she wants to go back to Tysabri, and interesting her Neuro apparently agrees. I wonder what is happening on Ocrevus that makes going back to Tysabri with a high JCV titer desirable?
Not that is surprises me from the standpoint of which med I believe is better. I clearly believe Tysabri wins. But it has that PML concern, of course, and that concern is too much for some, psychologically. All I can theorize is she must have felt a great deal better on Tysabri. Certainly, something to consider. Did she ever say why she wants to go back to Tysabri?
As far as pregnancy on Tysabri there is a thread about that topic. I read a comment about a study but not the study itself so what I'm about to say is unsupported hearsay... I believe I read where women who were pregnant and remained on Tysabri fared better than those who quit. PLEASE DO NOT QUOTE ME ABOUT THIS IT IS ONLY HEARSAY. The reason they fared better, I believe, is because the ones who stayed on it did not suffer from MS as much as those who stopped. Plus, Tysabri has some, but very little effect on pregnacy as we saw in the 350 Tysabri pregnancies thread.
Yes, I realize the prescribing lit suggests stopping Ty for pregnancy but it may be more 'cover your butt so you don't get sued' rather than a true medical concern.
Honestly, I think this lady may be fine going with 6 week infusions because of the dramatic reduction in PML risk on dose extension, even though she has a high titer. As you know, my spouse always had a high JCV titer and she did spectacularly well on Tysabri even after going 8 weeks between infusions.
Kris, are you aware that now that she is on Ocrevus we are again involved with dose extension? Since blood makers can be tested, her infusions are based on when CD19 B lymphocytes re-populate. She gets a blood test every two months to determine when the next infusion occurs. We are deeply, deeply thankful for the neuro who agreed to proceed in this manner. So, right now, she has gone 7 months between infusions and will go at least 8 months because that is when the next blood test is scheduled. Likely, it will show she does not need the infusion even then.
Why have we done this, you may ask? Well, if something is already dead (CD19 cells) why keep killing it? Test to see if those cells have come back and if not, there may be no need for the Ocrevus. What is unknown at this point is if MS symptoms will worsen. We think not, but we won't know until data is collected from people doing the same kind of dose extension, testing for CD19.
Of course, since Ocrevus kills other functioning immune cells, being the strong immunosuppressant that it is, it will be beneficial to a properly functioning immune system if those other immune cells are not reduced by Ocrevus. A more properly functioning immune system would lessen the risk of serious infections, possibly cancer, also.
Ocrevus is a med that is great for reducing MS progression, much like Tysabri in that regard. But, why not reduce the risk of serious side effects, if possible? Therefore, we are doing dose extension, thanks to our super, super, doctor. As you know, Ocrevus is scheduled to be infused every 6 months. Our belief is extending time between doses will keep MS in check, cost far less, and reduce heath risk...a win, win, win. A hopeful repeat of Tysabri in the benefits of extending time between doses.
I believe it was 2012, 2013 at the latest when I argued fervently with the treating neuro to put my spouse on dose extension because it made so much sense. Fortunately, that turned out spectacularly well. Today, virtually everyone on Tysabri who can ( some are unable due to very aggressive MS) does dose extension.
I cannot predict, no one can without confirming data, whether dose extension on Ocrevus will turn out the same BUT I have many, many reasons to believe it will. It just makes sense from virtually every angle of view. Much like Tysabri did to me way back when.
The reason I give topics like this so much study is because they are literally life and death, good health vs poor health. And often, the people at risk are limited by how much time and energy they can invest. Neuros are awfully busy, also. So, I study to learn for myself and apply what I learn to treatment for my spouse and anyone if else is interested, that's fine.
I am not a doctor. But notably, if you will indulge me... the 2002 belief that Tysabri would become a terrific medicine was largely correct, the 2012 belief that dose extension with Tysabri would prove wise was largely correct and my guess is that the 2018 belief that dose extension on Ocrevus will prove very valuable, also. I also believe talking about it in forums like this will, in time, save lives and preserve health. IMO, in 4 or 5 years when sufficient data emerges, most people will be doing dose extension on Ocrevus just as they are today on Tysabri.
Ha! There you go Kris, my guess for the future!
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