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JC+/-

Hi All, I hope this post finds you all as well as can be.

I have recently been diagnosed with RRMS (June) and still coming to terms with it all. This forum is a big help for me with so many different topics and valued input from everyone.

I have a question that I hope doesnt offend anybody. Im on a 4 weekly dose of Tysabri which is administered in a Neurology day ward with space for about 15 patients at a time. I was tested for the JC virus, when first diagnosed, and it came back negative. During my treatment today I overheard the nurse say to two different people that they were JC positive. My concern is that we are all treated in the same place so does this mean that the opportunity for the virus to spread is increased. I value anyones knowledge and opinion on this matter, many thanks.

I wish you all well.

Mick

Hi Mick

This is a good question, I’ve not heard anything about how it’s spread. I just did a very quick google search which didn’t shed much light. I’d be interested to see if anyone knows the answer though (not that it’ll make any difference to me, as I’ve got it, and I’ve been on Tysabri for about 3 & a half years.

Dan

Oh, and welcome to the board - glad you’ve found it helpful.

Hi Dan and thanks for replying. How are you finding the Tysabri treatment, ie side effects etc ? Hope you don’t mind me asking as I explained earlier this is all new to me and I would appreciate any help. Mick

Hi Mick, I`m not on tysabri, but I just wanted to welcome you to the forum and wanted to assure you that you will not have offended anyone here.

Your question is valid and I hope you get some more useful replies.

pollxx

Hi Mick, I am JC positive and on Tysabri. I think it tends to spread in poor sanitary conditions which is more prevalent in less developed countries. So no need to avoid the others in your group, but washing your hands as always is a good idea!. Peter

According to wiki, the intial infection site is often the tonsils. Or it’s passed through the gastrointestinal tract. So unless you’re snogging the person beside you lol, you should be ok. I’ve had steroids in the IV ward and they always wash down the chairs after each person so it’s unlikely you’d pick it up in such a sterile environment.

Hi Mick,

I can’t answer your specific question about how it’s transmitted, BUT I think it’s pretty prevalent in the world at large. Therefore I can’t see why you’d be at any higher risk from these specific individuals on the day ward, than you would be going about your normal life! If you ever use a shop, or any public place, you must inevitably be in contact with people who are carrying it. The only difference is they’ve had no reason to be tested, so you wouldn’t overhear them discussing it. Doesn’t mean they’re all clear though.

Tina

Thanks for the help everyone, It’s good to have contact with people in the same sort of situation. Family and friends are so supportive but don’t have the knowledge and experience that you all have to offer. I hope I can be help to others as time goes on, I’m sure I will. Mick P.S. I will try not snog anyone in the treatment room!

Hi again

Tina makes a good point. The vast majority of the general population are positive - maybe three quarters. So you’re as good as guaranteed to spend time in the company of people who have it every day.

To answer your question about how I find Tysabri, generally very good. It’s helped slow progression, and i’m barely affected by side effects (unlike the other drugs I’ve tried). I’ll feel a drop in energy in the week before my next dose, then pretty pooped on the day, but I soon pick up within a day or two.

Hope it works well for you

Dan

Cheers Dan Sounds similar to how it makes me feel. Mick