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JC positive- Tysabri or NOT?
Posted: Mon Jul 19, 2010 9:34 am
by jrosey
OK. I have gotten my test back and I am positive for JC virus. I am 4 yrs post diagnosis, male early 40's. Poor response to Avonex and now Copaxone, based on symptoms and MRIs. Still working and mobile, but there is no such thing as a symptom-free day. Ever. Increasing concerns with balance and legs. Was almost ready for Tysabri, but wanted to get the JC test for more confidence... this result has of course had an opposite effect. My thinking today is NO TYSABRI, no way no how. Then again, I am out of other options until mor approvals for orals, etc.
Thoughts??
THX!
Re: JC positive- Tysabri or NOT?
Posted: Mon Jul 19, 2010 9:39 pm
by NHE
jrosey wrote:OK. I have gotten my test back and I am positive for JC virus. I am 4 yrs post diagnosis, male early 40's. Poor response to Avonex and now Copaxone, based on symptoms and MRIs. Still working and mobile, but there is no such thing as a symptom-free day. Ever. Increasing concerns with balance and legs. Was almost ready for Tysabri, but wanted to get the JC test for more confidence... this result has of course had an opposite effect. My thinking today is NO TYSABRI, no way no how. Then again, I am out of other options until mor approvals for orals, etc.
Thoughts??
THX!
That's great that you were able to get tested first! I hope that this type of testing becomes more common.
NHE
Take it...
Posted: Tue Jul 20, 2010 5:06 am
by RuSmolikova
Jrosey,
If I was you, I would take Tys. Currently it is the most effective chance.
There has already been 71.000 MSers on Tys - and about 80 % of them have JCV. But only 52 people developed PML! The propability to develope it is still very low.
Btw: how is the JCV test provided? Can u share it with us?