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Pml

A MyMSTeam Member asked a question 💭
Nottingham, UK

Has anyone come across John cunningham virus ( jcv) ? I'm studying the affects that taking tecfidera has on the immune system ,those that carry the jcv virus are at greater risk of then developing pml . I've been told it's very rare to develop pml and not to worry myself ?? What to do ?? I'm actually thinking of stopping tecfadera.
Can anyone help x

October 23, 2015 (edited)
 · 
Be the first to react
A MyMSTeam Member

You really should not take Tec. against all, John. Your doc seems very nonchalant about it. You are at such a high risk of developing PML. Especially with your high result. PML has taken the life of many! Be careful!

October 30, 2015
A MyMSTeam Member

I'm on Tec. also. After giving blood at my last appt. a few weeks later I got a call to come in to see my Neuro. When i did they said that I tested positive for JC. Also that my number or whatever its called was on the high end. So they are keeping a eye on me & luckly I see my Neuro on the 6th of Nov. they were going to take me off of the Tec. but then they decided not to.

October 26, 2015
A MyMSTeam Member

I started on copaxone but relapsed so my neuro took me off of it. I now take tecfidera. We watch my blood counts and I really have no worries. I think there is a test for the JC virus antibodies. I believe that your immune system has to be very suppressed as if you were on chemo.

October 23, 2015
A MyMSTeam Member

I was just told I have a very high titer rate for the JC virus yet I was told my 2 options for meds are Tecfidera and Aubagio. I'm scared to death to get PML. Neuro acted as if Tecfidera and PML were different from PML & other meds like Tysabri.

May 31, 2016
A MyMSTeam Member

Well the only side effects that i get from Tec is the flushing which feels like a sunburn setting in & tingly all over as if something is crawling on me. That's just me, remember reactions are different in each person. Good luck hun.

October 30, 2015

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