80 treatments of tysabri...now Tecfidera

[kim_aikey]

I just had my 80th treatment of tysabri, not 1 relapse. My JC blood work came back positive so my doc wants me to switch to Tecfidera. I don't know what to do. Tysabri has worked so well, but now I am scared of PML , but also scared tecfidera won't work and scared of the side effects.

Has anyone had to switch? Can anyone give me any advice?

[PhiSiggyro]

I did about 55 tysabri infusions myself and I am also
JC virus +. Tysabri was great for me too, no relapses. The tecfidera seems to be working well for me

[thinkpink]

I had 80+ Tysabri treatments before I switched to Tech. I've only been on it for two months. So far, I haven't had any major relapses, although I have had a lot of side effects from the Tech and some old symptoms returning.
PhiSiggyro, glad to know it's working well for you. How long have you been on Tech? Did you have a rough go at first?

[PhiSiggyro]

I have been on tec since september. Had the usual problems at the beginning like flushing, getting random bouts of being really thirsty but not for long. Had a little minor flare a while ago with my right side not feeling right but some oral roids fixed that

[PhiSiggyro]

Oh I forgot, I wish I could stay on tysabri forever though it's some good stuff.

[thinkpink]

I have now been taking Tec since December 18 (started the full dose Dec. 24.)

You can see from my previous comment that I was NOT happy about having to switch from Ty. Beyond the side effects, I was concerned with having a big relapse. My NO said the chance was greatest, from what she's seen, during a window of 2-4 months from the last Tysabri dose.

So far, so good. Other than today (maybe because I missed a dose?) I have been feeling much better. The nausea and indigestion are letting up, and even the fatigue that followed that is decreasing.

More importantly, although I did have a couple of times when I felt some old sx coming back, it hasn't been bad enough to need Solumedrol, and those sx have mostly resolved.

I have another week or so to go before I'm out of my doctor's 2-4 months window, but I have to admit I may change my opinion. I started Tec as a dr-mandated "break" from Tysabri, fairly sure I'd return to it. But if I continue to do well symptom-wise, and start to feel better more consistently, Tec may well be a long-term option for me.

[REG53]

I had 76 infusions and because of jvc+ I started Tec.

I have been on Tec. since July and had very little side effects in the beginning with Tec. and now I am doing very well on Tec.

Wishing you the best whatever you chose.