Progression on Tysabri

[palmtree]

I've been on Ty for 41/2 years.its been working for me really well. But last summer my air conditioner broke and I had to wait a day to get a new one.

That day I fell to the floor I was so hot i passed out for 5 hours. When I got up I couldn't walk and had terrible tremors all over my body.

I was hoping the symptoms would go away but they did not. When I saw my neuro, she could see how much worse I was and ordered an MRI. I got the results back and can see that there were a lot of new lesions.

My neuro is probably going to think the TY is not working but I think it was heat stroke. It seems that everyone else on TY does not get new lesions. Has anyone else progressed while on TY?

[pennstater]

I do remember a few people who had new lesions while on Ty. I have had 2 relapses in 2.5 years, some worsening of symptoms, but NRIs were stable. So staying course with Tysabri.

Is your neuro considering changing DMDs?

[KatieAgain]

I had a flare that hospitalized me last year 6 months in. Just had a very small flare recently. No new lesions and no progression.

There has to be people that have developed lesions on TY...it is not 100%. Has your neuro checked you for antibodies to TY to make sure the drug has not built up a resistance?

[Stacer]

I've been on tysabri for 6 years -#75 next week. I get MRIs every 6 months. The result to date has always been no new lesions. I have an EDSS of 6.5. If I look at myself now and compare it to 6 years ago, I feel like there has been some progression, but it's very difficult to measure since my EDSS has remained consistent - maybe .5 increase? I also contribute some muscle atrophy to increased mobility issues.
So progressed? maybe New lesions - no
Hope this helped
Stacey

[22cyclist]

I just developed a new spinal lesion on Ty that left me with TM. My brain is stable so far. I am JCV+ so I am considering chemo now.

What are you thinking of taking?

Lisa