Rutuxin or Tysabri?

[Myoak]

I know roche has been in conflict with the neurologists here,but the doctors "won" so to speak,so they keep using rituxan.i got my first dose in april.1000 mg. in october i will get 500 mg

That is great news! It does appear your doctors will be able to adjust more easily, if adjustments are necessary. Really great news!

[Medina89]

I hope so

[ru4cats]

High praise, Myoak! Thanks! I really need to restrain myself when I see recommendations of Copaxone, Rebif, even Tecfidera, hence "hair on fire". I was so lucky to have a progressive neurologist in little old Montana back in 2010 who got me on Tysabri as my first medication. I watched her get other 20 somethings on the medication, and their MS just seemed to disappear. They are leading completely normal lives with just one little infusion every 28 days; you would never guess they had MS. I'm now really a proponent of the "hit it with a hammer" philosophy and spread the word far and wide. I'm joined a FB group for Tysabri and really promote it there, along with the extended infusion's protocol, once someone is stabilized on the medication.
I actually called Biogen and asked about extended infusions. All they said was their protocol was every 28 days, but it was up to my doctor. Thankfully, they've never questioned it. My neurologist is comfortable putting me in charge of my infusion schedule of 6 or 7 weeks. Since I have a 110 round mile trip for each one, this flexibility really helps in the dead of winter. I don't know that I even need medication at my age, but stopping is just one risk that isn't worth it to me.
I asked whether she thought Rituxin would ever be approved for MS, and no surprise she said no; Big Pharma strikes again.
I love your addition of information on extended infusions. I've bookmarked the information and will share with others.

Kris

[Myoak]

Hi Kris,

Apologizes for misspelling your name before.

You are so right about being aggressive early on in MS treatment. We both know several people on Tysabri whose disease progression halted and they seem largely unaffected by the medicine or the disease. No, Tysabri does not work that well for everyone. But for the majority (and each one I know personally), it seems to.

Ocrevus and Rituxan are very good medicines for MS, too. What I see in this household switching from Tysabri to Ocrevus is more fatigue and more MS symptoms. Of course, response varies individually, as always. Some people may do better on Ocrevus than Tysabri, if so, we need to hear from them. I think those who switch should give it a year and then speak up about their experience, or what they have observed. That is one of the great values of a site like this.

Absolutely, your voice is so important. People contemplating going on a DMT need to know what your experience is with Tysabri and what you have observed in others.

With expanding acceptance of dose extension as a method to de-risk for PML in those JCV+ using Tysabri I hope Tysabri will be more thoroughly considered by those choosing a DMT.

I agree with you that choices like Copaxone, Rebif, Tecfidera and most others commonly offered the newly diagnosed are going to be hugely disappointing in the long run if irreversible damage occurs while taking those meds rather than a highly effective one like Tysabri.

I agree with you... attack MS early and aggressively. The wait and see what happens is last century's bad idea in neurology. We did that and it was a bad idea. JMHO.

[Medina89]

Anyone on rituxan? i took my first rituxan 6 months ago 1000 mg,now i just found out my second rituxan dosage will be 1000 as well.isnt it supposed to be 500? anyone knows more about this?