Last reply 2 weeks ago
Pml treatment

One of the scariest side effects of ms dmts is pml. This article seemed pretty exciting and didn’t seem to make the news much so I thought I would post it here. Given how serious and rare it is not sure what kind of trial would be needed. I hope to find out more because if anyone gets this life threatening condition would be good to know there is an option. This should be of particular interest for tysabri users.

http://www.medscape.com/viewarticle/903708

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californiadreamin
3 weeks ago

https://www.europeanpharmaceuticalreview.com/news/80050/t-cell-therapy-pml/

Another link to the same info in case this one is better.


stumbler
3 weeks ago

@californiadreamin , the second link works better than the first. 😉

But, it’s encouraging to know that there’s a fallback position for the PML risk, One hopes that it won’t be needed, if the potential risk is managed efficiently.


doubleo7hud
3 weeks ago

Thanks for reminding me about the risk with Tecfidera 😂

*hides behind the sofa*

*farts and forgets why hiding*

*comes out from behind the sofa*


clairechiz
3 weeks ago

Hi there, I have just been diagnosed with P.M.L. scary sh-t!!! 1 in 1000 chance and I was the chosen one!
Needless to say my Tysabri infusions have ceased. I am currently paralysed on my left. Help!!!
Claire x


stumbler
3 weeks ago

@clairechiz , you’re right, it is scary sh-t!

Hopefully it has been caught early enough and can be treated. Here’s some more information:-

https://www.mstrust.org.uk/a-z/jc-virus-and-pml


jules4
3 weeks ago

Really interesting article for me, as about to start Tysabri treatment despite being JC positive. I’ve been advised that my JC level is low, but still a greater risk of PML. Hope you get sorted soon @clairechiz.


californiadreamin
2 weeks ago

@clairechiz I would call MD anderson and see if there is *any* way to get that treatment urgently. Its worth anything to get it if you can.


californiadreamin
2 weeks ago

@clairechiz in the US we have something called compassionate use. It allows for the use of a treatment thats not proven on the grounds there are no other options. Request that and see if you can get access to it.

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