Hi from Texas: Wanted to say Hi to... - My MSAA Community

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Hi from Texas

Justrubl profile image
14 Replies

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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Justrubl profile image
Justrubl
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14 Replies
AnuragS profile image
AnuragS

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

Justrubl profile image
Justrubl

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.

AngieRowe profile image
AngieRowe

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.

tweets335 profile image
tweets335

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

positiveness profile image
positiveness

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.

Justrubl profile image
Justrubl in reply to positiveness

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.

MS2014 profile image
MS2014 in reply to positiveness

Is Gilenya working for you? Which is better?

positiveness profile image
positiveness

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

nes78 profile image
nes78

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.

SepFromWisco profile image
SepFromWisco in reply to nes78

Heard great things about Dr. Burt and the whole program

Justrubl profile image
Justrubl in reply to nes78

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.

seshultz profile image
seshultz

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!

Justrubl profile image
Justrubl in reply to seshultz

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

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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