Before starting Tecfidera, my Neuro tested me for it and I was negative for this (at least that is what I thought, though MyChart didn't exist here at that point..2+years ago). My new neuro ran this test (the last test in the 3 different days of headaches for bloodwork) and I just received the results from MyChart today...if I didn't I was going to call my Neuro's office because it has been over a week since the test was done. This Friday, I have an MRI.
For those that are JC positive, what med are you on?
Test Name: JC Virus Antibody
Result: 0.92
JC Virus AB: POSITIVE
Reference Range:
<0.20 Negative
0.20 to 0.40 Indeterminate
>0.40 Positive
Antibodies to JC Virus detected indicating the patient has been exposed to JCV at an undetermined time.
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bxrmom
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I haven't talked to my neuro yet. I have read that The JC virus, or John Cunningham virus, is a common germ. More than half of all adults have been exposed to it. It doesn't cause problems for most people, but it can be dangerous if you have a weak immune system. There's no known way to keep yourself from getting it.
If you are taking Tecfidera you are 'supposed' to be tested before starting and then I think every year. It can lead to PML so I would think other rxs that may cause PML would have to be tested for it as well. It has been 2 years since I started Tecfidera so the nurse was not happy that I had not been tested since starting Tec.
Many people have it. If it is activated it can lead to pml so if you have high jcv number your neuro may not want you on certain dmts. I was tested prior to being given dmt options.
I was put on Tecfidera for a year by a terrible MS doctor when i was first diagnosed, before i was tested for jc. The Tecfidera really lowered my white blood cells to dangerous levels and the doctor wouldn’t switch my meds. So i changed doctors and the new awesome doc tested me for jc (positive) and put me on Copaxone. (The first doctor has since been fired)
Hi honey I’m JCV positive at 0.59 am on Tysabri my MS nurse says it’s very low positive so am trying not to worry xxxxx my friend Claire who was in the same Tysabri group as myself and Andy (another MS friend) has PML bless her and in a nursing home! 🙄🙄🙄🙄🙄❤️❤️❤️❤️
This is my first time hearing about the JC virus. I am assuming that my neuro checked me out before I started Ocrevus. Thank you for the info. because I didn't know.
Cutefreckles, dont assume, look for test in your records and ask.
I dont know why they create all these new drugs with these risk factors. They need a cure, not continuous customers. The risks are low, except if you are the statistic.
Bxmom, hope all goes well. Prayers for all.
Happy Thanksgiving to all and gratitude for the honest sharing of this group
I was tested for JCV before starting Tysabri. I was on Tysabri for 5 years all while being JCV+. We had to wait for an equally strong DMT before I could be switched. I’ve now been on Ocrevus since Dec. 2017.
After doing some research, I'm going to be talking to my Neuro about switching to Ocrevus when I see him in February. Thanks for sharing your experience Raingrrl .
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