Tysabri, Flare/Relapse, MRI

[MarilynS]

1. I am going to the doctor's next week with my adult daughter. What kinds of questions should we ask? She has been on Tysabri since 2007 or 08. So far she has been symptom free, told MRI's are clear and that she is negative for JC Virus antibodies. Recently, she has had symptoms, tingling in fingers of one hand, weakness in shower, and now fatigue. Infections were ruled out. Last JC antibody test (negative)was abut six week ago. New MRI shows no PML or MS lesions.
2. Do any of you have relapses without anything showing on MRI? Do you know if someone can have PML without it showing on MRI?
3. Are their any tests for JC Virus, other then routine blood test .. which may show false negative?
4. Is it common to have repeated flares/relapse on Tysabri? Does risk of flares/relapse increase after the first one? What are your experiences?
5. What is the difference between a flare and a relapse?

My daughter wants to continue with Ty, since it stopped her relapses cold.

If you can think of any questions we should be asking doctor, or have any comments, please reply.

[hunterd]

" I am going to the doctor's next week with my adult daughter. What kinds of questions should we ask?"

if anything in particular is on your mind, ask about it. A peaceful mind will go a long way.

" Do any of you have relapses without anything showing on MRI? "

I believe it is fairly common to experience a new symptom without anything new showing up on MRI.

" Are their any tests for JC Virus, other then routine blood test .. which may show false negative?"

I believe that is the only test available, but I could be wrong as I have no medical training.

"Is it common to have repeated flares/relapse on Tysabri? Does risk of flares/relapse increase after the first one? What are your experiences?"

I do not have any experience in these matters and I cannot answer your questions regarding them

"
What is the difference between a flare and a relapse?"

A flare is when symptoms are more active or new symptoms arise, a relapse is when everything subsides.

National MS Society http://www.nmss.org , for more information.

[KatieAgain]

Yes, I have had two relapses on TY. One showed on the MRI, the other did not.

There is another blood test for the actual JCV Virus used by Oncologists. It is a little more reliable, but exceptionally expensive. If you daughter has had repeat testing of the JCV I would be reassured she is still negative.

Additionally a LP can detect the JCV.

PML will show up on a MRI. In fact it is glaring.

TY will only stop flares to a point. Many are lucky not to have any. If new lesions start popping up, then the TY might not be working.

Flares, Relapses, and Exacerbations are the same thing. When they happen is unpredictable.

[MarilynS]

Thanks for response

Thank you for telling me your experience with Tysabri. Dr. apt was today. He does not think my daughter had a flare, he thinks it was a damaged nerve in her arm, that came from falling asleep on with her elbow in a weird position. ....
Unfortunately, the last JC antibody test was positive. But a low titer or score. She will continue with Ty, but will get JC test every month, and start getting MRI every six months.