I have just been informed i have contracted the jc infection i have the jc test when getting my infusion for ms .
I’m extremely worried does any one else no what the outcome of this or also have jc and ms . i’m extremely worried my babys stil so young and im googling away and all the answers are so bad
I am sure you would be told if it was likely to be a problem, but probably best to run it past your nurse for peace of mind.
This is from the Barts Tysabri Risk Guide.
“As with most drugs, there are risks linked to the long term use of Natalizumab. The main risk is a potentially fatal brain infection, called progressive multifocal leukoencephalopathy (PML).
PML is caused by the JC virus, a common virus completely unrelated to MS. The virus has no symptoms so we don’t know we’ve got it. You must have been infected with the JC virus to be at risk of PML.
Almost half of the general UK population are infected with JC virus in childhood and adolescence. It is unknown how you catch the virus, but you excrete it in your urine and we think it is found in the tonsils. A JC virus test will detect if you have anti-JC antibodies, meaning you have been infected with the virus at some point.”
Understand your risk of PML with Natalizumab (clinicspeak.com)
Thankyou
Morning Becky,
I am positive for the JC virus since starting my Tysabri 4 years ago.
I am still on Tysabri and my last blood test (which is done 6 monthly) was 0.6 the first one was 0.9.
My neurologist said he is happy for me to stay on Tysabri but I have moved from 4 weekly to 6 weekly as it does minimise the risk of PML by quite a vast amount.
They keep a good eye on you at the hospital.
I hope this helps to settle you a wee bit but please just ask anything and I will try and help if I can.
The great people on this site have been with me through my worries so know you are not alone.
Much love
Maryx
Good morning Becky,
Your reaction is completely normal, but please try not to worry.
This happened to me too! About 6 years ago, tested negative to receive Tysabre infusions and they were going well, then i tested positive for JC virus.
i was devastated as my meds would change, and could find very little info & was given no real assurance that i wouldn’t develop an infection in my brain. (Like having MS isn’t bad enough?!)
And then nothing happened. World Journal of Neuroscience estimates between 70 and 90% of the world population carry the virus. Also think it’s quite rare for JC+ to develop into PML
What’s your story? and does this help?
Hope you’re doing well
Hi, thanks for replying i am
On Tysabri already i have been about 2 years now and it’s really worked great for me but i think i would be too worried now taking it now i have caught this jc i’v been looking up this pml and really scared my self now it seems there’s no cure and it takes you quite fast thats all i can see on google soo many bad storys i’v been told Tysabri can cause pml ? Im hoping theres a medication just as good ? Its great your levels of jc have dropped thats so hopeful Xx
Your story’s sounds just like mine thanks for your reply . Tysabri as kept all my brain scan’s clear since taking it no more lesions! now i’v caught jc it’s really scared me and looking up pml has not been good Do you no how many people who get ms go on to get pml ? is that more common ? Im really hoping theres another medication as good but in doubtful as if Tysabri comes with pml risk and they still give us it then im taking its there best medication xx
sorry i’m not sure how many people develop PML but my neurologist took me off Tsabri immediately.
And for all the uncertainty of finding a replacement medicine i couldn’t disagree. I think no point in taking any risks that may cause your brain or body any further risk.
My best advice to you is just ask loads of questions. I think they moved me onto Gilenya which was good for stopping relapses but i had other side effects.
Ocrevus been working for me for 3 yrs now… truly i hope you get on okay xxx best of luck
Im glad to hear the new medicine is working good for you that’s something positive to hear ! I went to see my gp yesterday was hoping to find out a little more on jc clear my mind she made me feel like i was crazy rushed me out of room told me to contact a ms nurse infuture i thought a gp would have knowledge on jc but seems not. Hopefully il be back on a different medication soon and feel a bit more at ease thanks fir your reply xx