My MSAA Community

Hi from Texas

Wanted to say Hi to everyone. I was diagnosed with this beast in 2005. I have been on 3 different meds and about to go back on Tysabri as long as my blood work comes back ok. I went from Rebif to Tysabri to Techfidera back to Tysabri and now on Techfidera again. I am getting weaker again so I talked to my Dr about going back on Ty since I seem to do better on it. Just wanted to say Hi to everyone.

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Just after 4 months being on Tysabri I am JC virus +

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I am JC positive also. The Dr wants to see the lab to see what my titer is. The higher it is the greater the risk. Last time he did one I was 2.4 but he was ok with that.

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Hi, Just, I am from Arkansas, dx in March 2016, on copaxone 3x wk. I have foot drop, which is my biggest issue. Use walker almost all the time now, but going back to rehab soon.

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I am on Tysabri. I started on Rebif, then copaxone, then gilenya. Now on Tysabri. Doing better on Tysabri than any other treatment.

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I have been on tysabri, but I tested positive for the JC virus and switched to Gilenya. I did like how Tysabri worked for me, though.

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How is the Gilenya working for you. I talked to my Dr about it and Lemtrada (sp) and he said he didn't even prescribe Lemtrada due to the side effects. I am hoping my JC virus titers are low enough he will allow me to go back on Ty.

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Is Gilenya working for you? Which is better?

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By the way, hi. I totally forgot to say that first.

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if you are failing dmds and have active rr ms hsct might be a possible option for you! i was on chemo and betaseron for years, tested jc positive and ended up in a nursing home at 35. hsct brought me back to life and i just wish i had it done sooner! i was treated at northwestern in chicago.

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Heard great things about Dr. Burt and the whole program

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I did not do hsct but did do a stem cell treatment and it seemed to help for a short time but then the symptoms started coming back. Not sure if it the treatment wearing off or the change in meds.

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I certainly hope you are doing better. I am wondering, if I may ask, why did you stop Tysabri to begin with if it was doing a good job? I have to go on something new, seeing a specialist end of month because I have been on 4 and my ms is just getting worse. Tysabri is one I was wondering about. Lemtrada is the one my new neurologist has suggested. Hopefully, I will know better what to do when I see the specialist he is sending me to. Just trying to learn all I can before I get there! Thank you for posting!

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I started a new job and wasn't sure if I could get off for them

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Hi and welcome to the group. Look into getting on Ocrevus [update to Rituxan and approved for all types of MS] or Rituxan [been on the market for 20+ years and has great history]. Both have great results and next to zero risk for PML. I've been on Rituxan [off label use for ms] for a few years and love it.

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