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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has Anybody Tested Positive For Jvc Virus That's Not On Tysabri

A MyMSTeam Member asked a question 💭
Mount Vernon, IL

I just found out I tested positive for the jcv virus, but not on Tysabri(sp). Has anybody tested positive that not on Tysabti and it turn toPML? I hate to say but I'm a little scared and confused.

September 5, 2014
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A MyMSTeam Member

I tested positive for JCV with a level count of 1.0

My doctor felt I should still go on tysabari ...the 1.0 increased the odds of pkl but not so much to not try

Due to how aggressive my ms has become after lots of doctor discussion...and talking with other MSers ... I did make the decision to do tysabari... A year on copaxone during which I developed lesions in my spine :( which I did not have last year....
I needed to be as aggressive as ms is being
Doc will be checking my blood levels every few months..to watch for a rise in the number of JCV .... Pray with me that those numbers don't go up....AND that I start to notice some of the remission of some of the symptoms

September 6, 2014
A MyMSTeam Member

Update..my JC virus level keeps decreasing ...started at 1.0, six months later down to .70.....last test shows .60 ...it's going down! And I'm feeling better! All good

August 27, 2015
A MyMSTeam Member

I'm JCV positive. The Dr put me on Ocrevus. My jcv numbers were a 3.94 now down to 3.63. Not sure what I'm doing but I hope I keep doing it. I was told jcv numbers don't go down. So when I heard they did I was happy but confused. Then I just read in this post Cunning100 saying her numbers have been going down and still dropping so I'm very hopeful. The whole number thing scares me on what's the highest number before PML sneaks he's head around...

June 24, 2018
A MyMSTeam Member

Yes I am on tecfidera since 2013

October 9, 2016
A MyMSTeam Member

Cunning100 what meds are you own

July 2, 2016

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