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Tysabri help

Hey folks hope everyone is good

I am really worried and scared about catching PML with doing the treatment. I can’t be anymore scared about the thought of it, can someone please put my mind at rest? I would be really grateful. Lee

Hi lee I’m on it and glad to be, yes there is a risk , but without it my ms , I feel will just get outta control, just feel I got to fight back. If you have Facebook there is a great group on there called tysabri uk, really helpful and some who have been on it for years. Gray

I’m booked to start tysabri later in the month and yes PML is a worry. Have you had the JCV test yet?

Hi

I’ve had over 50 infusions so far and am very happy on it, despite me being JC positive. The nurses at hospital are good at screening for it, and will be quick to refer if anything untoward crops up (not that it ever has with the group of us that all have our infusions together).

The risk of getting it is very small, but there is still a risk nonetheless. No one can make the decision for you though. What you could do is try it for a short period (apparently the risks are smaller in the first two years), then see how you feel after (this is what I did, and decided to keep going). But if you think it’s too big a worry, then don’t do it, and ask your neuro what other options there are.

Dan

I’ve had a pretty bad year this relapse has knocked me off my feet and in a wheelchair, I am waiting for a MRI to see what’s going on, and I have had bloods taken for the virus, just gotta wait and see what the MRI says. In all honesty I ain’t a risk taker when it comes to things like that, knowing my luck I will be the one that gets it. Everything from the start of the year has went downwards, and I’m waiting on copaxone injections, just really dunno what to do Lee

Is it Aberdeen you go to lee? Or have I mixed u up with someone