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JC Virus Results

Hi Everyone

I had my first Tysabri infusion last week, all went well and I had no effects apart from feeling very tired for a few days.

When I had the blood test for the JC virus I confirmed that I had decided to go ahead with the infusions whether my test came back positive or not. Funding had already been approved so I was slotted in to the next available slot for my transfusion.

I opened the post today and had the letter confirming my results, I am positive for the JC virus. It hasn’t changed my decision, I was always aware of the risks and I still believe the potential benefits to me are worth giving it a go, but it still sucks. It feels like I’ve been hit with nothing but bad luck since July, I was hoping for a glimmer of good luck but I guess it wasn’t meant to be.

I’m ok, I will still continue the treatment, those around me know the signs to look for and we all know the figures involved in terms of risks, but reading those results really got to me and I couldn’t help but cry.

Thanks for reading, now I’ve vented I can start to feel better about it. It sucks but I can pick myself up, focus on the positives and carry on taking each day as it comes.

Thanks
Zoe x

I had my second Tysabri infusion on Thursday. I don't know yet if I'm JC positive or not.but I did read on here that just because someone is JC negative now, it doesn't mean they won't test positive at a later date.I haven't checked that out with my MS nurse yet, maybe someone else can confirm it.

Anyway,I can understand how you're feeling, but the chances of deleloping PML are so small, that for me they don't make a difference. That's how I've decided to look at it.Take care,xxjo

Hi Zoe,

Sorry to hear that.The news sucks. I got my results last October and I'm JCV positive as well, along with about 60% of all those tested.

I did feel quite down for a couple of weeks after my news (I'd had about 30 infusions by that stage) and I felt the need to "get things in order" - sort out my will, set up lasting powers of attorney etc. But I have to say that the fear of my increased risk has faded now. It's still in the back of my mind but more in a good, thankful for all the great things in my life right now, sort of way.

I follow the updates on PML and still haven't seen any reported cases in the UK - I was irrationally convinced for a while that it was going to be me ;-) .

The other re-assurance I can offer is around how closely my hospital monitors us. Not only do I have regular MRI's and a detailed monthly neurological change review with the nurses, but I had a weird group of symptoms last March and was whisked into hospital for four days (the most boring four days of my life!) under obervation. They concluded I'd reacted badly to the IV steroids I'd had the previous week.

I hope you find the Tysabri to help as much as I have. It took a few months before I saw much difference but it's kept me working and enjoying family life.

Sending you a sympathetic <<hug>>

Lisa

Thanks both. It hasn’t changed my mind in any way about having the treatment, although I know it doesnt work for everyone I have heard such good stories about and I am thinking really positively about the difference it can make to my life. I was prepared for my MS diagnosis, for some reason I wasn’t prepared for this test result, I didn’t think it would make me so sad. I’m feeling better already though, just getting it out of my system really helps.

People have been telling me lately how brave they think I am, I don’t feel like its bravery at all, I don’t feel like I have a choice. Life has dealt me a hand that makes everything look very different for me, I can’t change it so I’m just doing the best I can. I was hoping for a bit of good luck, I’ll just have to wait a bit longer - maybe I’ll win the lottery!

Zoe x

Hey Zoe

I will have been on Tysabri for nearly three years now and I have not even once thought of the PML "issue". For me, it is the balance of probabilities and looking at what tysabri has enabled me to do so. I have been invited to interview for a p/t degree course that I would like to do, which would never have been contemplated pre-Tysabri. 

As the chance is only 1 in 300 or 0.3% of PML I have told my Ms neuro and infusion nurses not even bother wasting NHS time and money getting the test done as I am going to stay on it for as long as I can, evenif I were JCV negative. And if I were, what would stop me from getting it in the future?

Andy