Anonymous 10/03/15
Last reply 3 years ago
Testing positive for JC virus

14 weeks ago I had a baby, so was on a medicine break from copaxone, which I’ve had since 2012. I was chatting to my MS nurse about other options, as I wasn’t tolerating copaxone very well. she mentioned Tecfidera, and send my blood for testing. I understand that being JC positive can prevent you from taking more that one medicine to treat MS. My test came back positive and now I feel a bit lost. Anyone out there JC positive that on an oral drug? Xx

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grahamjk
3 years ago

Hi @tuesdayschild84 I was tested for the JC virus to take TYSABRI and I was found positive, by all accounts being positive isn’t a problem in itself but with TYSABRI the risks of problems go from 1 in 10000 to 1 in 1500ish. But I start treatment tomorrow so that might be a possiblity.


stumbler
3 years ago

@tuesdayschild84 , some DMDs do have a risk of contracting Progressive Multifocal Leukoencephalopathy or PML, e.g Tysabri and Gilenya.

This risk is increased if you are tested positive for the JC virus (JCV+).

This needs to be weighed up against the fact that all DMDs are associated with some risk or another. These risks are mitigated by regular monitoring.

In the case of being JCV+, the JCV levels would be monitored, with any unexpected increase invoking a decision as to whether to continue that particular treatment.

@jasfromtas , is well clued up on the risks and management of those risks.


ruggermad
3 years ago

Hi Tuesdayschild

I am on Tecfidera and have just started my 5th (maybe 6th) week. I had my blood test and found out I was JC positive. I was told the result by my neuro but he didn’t seem too bothered, I am scheduled to have further blood tests every 3 months.

This is my first DMD and popping a pill morning and night is not that bad compared to having to inject.

Cheers

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