Last reply 3 years ago
Tysabri and +JC – worth the risk?

Hi all
My Doc thinks Copaxone is no longer holding the MS at bay (two attacks in four months), and he wants me to start Tysabri immediately even though i tested positive for JC – it scares the life out of me, has anyone else started Tysabri when Jc positive? My levels are 1.499 so right on the borderline of high risk. Any opinions, exeperiences welcome, I really dont know what to do – thanks everyone.
Jo

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stumbler
3 years ago

@mrsmenz , the risks associated with Tysabri are now known. So you will be closely monitored to mitigate these risks.

Any elevation of that risk at any stage would prompt a review of your treatment.


rosieah
3 years ago

Hey Jo,

I started Tysabri 18 months ago. I’m negative for the JC virus but regardless if you are or not they check you have no infections and closely monitor you all the time at every treatment.

When I was put on it I’d had 3 relapses in 6 months and I haven’t had one in the 18 months since and the only side effects are feeling a bit wiped out afterwards, maybe a headache. It’s totally changed my life – but obviously it’s much more difficult being +JC.

Just go with what’s right for you!
Rosie


jj5sim
3 years ago

Hi @mrsmenz
I was on Extavia for 18 months and my neuro came to the same conclusion as yours has because I was still getting a relapse every 3 months like clockwork. I am jc+ but i came to the conclusion that the risks are worth it as potentially it gives me the best chance of increasing the amount of time between relapses. I had my first treatment at the start of this month. Without treatment the damage to my brain and spinal chord will continue to worsen so anything is worth a go. The MS nurses keep a check on you for any signs of pml regardless of your JC+/-.
I was also offered Gilenya (50% increase in time between relapses) but the statistics swayed me towards tysabri (85%).
My first treatment there were 5 of us in the room getting treatment and it turned out after speaking to them they were all JC+. One of them has been on it for 2 1/2 years, Two of them have been on it for 3+ years and one of them has been on it for 6 years. When i asked the question, What are your thoughts on tysabri? All of them were in agreement that it has changed their life for the better.
Good luck with your decision


mrsmenz
3 years ago

Thanks for your responses everyone, its so great to get real life opinions from users, not just the docs who are trying to push it.
My husband is dead set agaignst it as he fears that im unlucky in health – worse case of any childhood illness known to all my docs, and developed two dvts during my last big attack a few years back – so i can understsnd his scepticism and concern, and It scares me a lot too. I think if i was less than 1.5 I’d be a little nore open to it. Leaning towards Gilenya, but Johnny your post is pretty eye opening and Rosie, what a recovery, amazing!
I think Ill weather this steroid treatment and see how I fare afterwards and make the call then.
Thanks again everyone, hugely appreciated – its so nice to have people to talk to. Thanks 🙂


cameron
3 years ago

I’m on Copaxone (10 years on it) and the neuro thinks I may have breakthrough disease: he’s offered Gilenya, no other option. Am hoping to start in January. I don’t know if your neuro would have discounted Gilenya as an option and if so why. If he has, it would be good to know why: a bit more explanation from him might clarify your thoughts.


khadieja
3 years ago

I’m JC+, but started Tysabri just last week! The nurses do keep a very close eye on you, to make sure you don’t get PML, however they did tell me the risk of developing PML is similar to somebody who’s JC- (extremely rare!), it’s only after 48 months the risk increases!
Good luck with your decision!

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