Hi recently diagnosed RRMS, JCV negative and about to start Tysabri. l was wondering is it impossible to get PML as long as you are JCV negative or is there still a 1/10,000 risk. Do you think the effectiveness of tysabri is so good its worth 1/10,000 risk or should l go with another drug like ocverus, what did others here on the forum decide, did you think tysabri was worth the risk or did you choose another drug.
I tried to think of these risks and benefits in context rather than in isolation. Balanced against the risk of drug side-effects you have a clear and present risk of highly active and poorly controlled MS wrecking your life. there are no risk free options here.
yes l guess a tiny risk or PML vs a certain risk of MS getting worse its an easy choice, especially as l am jcv negative
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Hi jjim335, I have been on Tysabri for 4 years now and was jcv positive on my first infusion.
I am currently still receiving tysabri albeit 6 weekly now as opposed to 4 weekly.
My mri has been stable for the past 4 years and my neurologist feels it is working well so will keep me on it, monitoring me.
I take on board all their advice/guidance as they have kept me right so far.
I hope thngs work out well for you.
Much love
Maryx
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yes l heard a neuologist say lots of thinks in combination need to go wrong to get PML , l guess theres probably more chance we get terminal cancer . l was diagnosed with RRMS but there could be a small chance its PPMS but unlikely. If it was PPMS would tysabri still work, l guess if it doesnt then l switch to ocrevus
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Well, you certainly don’t want to worry yourself into an early grave if you can help it. 
Tysabri has kept me well for 15 years and counting. I hope that you find the same,
I am not sure which DMD works with PPMS but they will keep a good eye on things and will have you on the correct treatment.
I take each day as it comes and as Alison has said try not to worry. (easier said than done at times I know)
Much Love
Maryx
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