Positive for JVC / Tacfidera

jnewk · 11-08-2013, 02:10 AM

Quote:

Originally Posted by Lynn

This article I have found states that the survival rate with MS related PML is up around the 70% mark - BUT consequential disability is usually high. IRIS or immune reconstitution inflammatory syndrome occurs, in almost all patients after they are treated with plasma exchange to rapidly remove all traces of the drug.

IRIS results (as the name suggests) in brain inflammation - my doc kind of explained it like having very serious back-to-back or concurrent relapses.

Janet, read this article - one thing that did strike me when I was reading your earlier post was that you mentioned other health problems, and I wondered about past drug interactions - if you are JC+ and have used certain other drugs (methotextrate to name one - but I know there are more - especially cancer drugs) - then for sure your risk for PML with Tysabri increases massively I don't know about Tec, but worth checking.

http://www.medpagetoday.com/Neurolog...eurology/26628

Regards

Thank you Lynn...I will read the article in the morning. yes, I've had a lot of serious health issues and take a bucket full of meds daily and have had problems with contradictions before. I just did not have a good feeling about this and maybe its my over thinking but ultimately, I still see the risks far outweighing the possible benefits. And honestly as well, the idea of takng something with even nonfatal but severe side effects doesn't feel right either. I'm already sick, I don't need to take something that will make me feel sicker so that it might make my MS slow down? Not much of a trade off. Its good to be able to "talk it out" with you all on this board. it really does help.

janet

Lynn · 11-08-2013, 06:58 AM

Frankly, with your history, I would be very reluctant. I am JC+ and on Tysabri (for more than four years) and getting scared myself. But part of me figures I'm on it now, so I am damned either way (which may be right or wrong). Having said that, it has been amazingly good for me, MS-wise, but your circumstances are different to mine.

Just take care of what you put into your body - 'cos we just don't know what it will do. Know the risks, weigh up the possibilities.

karilann · 11-08-2013, 04:06 PM

I took TEC and had to quit by day 25.
I followed a post of hundreds of people who started taking it about the same time due to the release date of the drug.

Some people were fine and some people had side effects.

From my knowledge 60% do fine and 40% do not. 40% is a high number if you ask me and the side effects can be nasty.

I went back on the interferons which have been safety tested over years and do not make me sick at all.

I think if I had the virus, I would not take anything that had ANY risk whatsoever of PML. Just sayin........

jnewk · 11-08-2013, 04:13 PM

Quote:

Originally Posted by Lynn

This article I have found states that the survival rate with MS related PML is up around the 70% mark - BUT consequential disability is usually high. IRIS or immune reconstitution inflammatory syndrome occurs, in almost all patients after they are treated with plasma exchange to rapidly remove all traces of the drug.

IRIS results (as the name suggests) in brain inflammation - my doc kind of explained it like having very serious back-to-back or concurrent relapses.

Janet, read this article - one thing that did strike me when I was reading your earlier post was that you mentioned other health problems, and I wondered about past drug interactions - if you are JC+ and have used certain other drugs (methotextrate to name one - but I know there are more - especially cancer drugs) - then for sure your risk for PML with Tysabri increases massively I don't know about Tec, but worth checking.

http://www.medpagetoday.com/Neurolog...eurology/26628

Regards

thanks Lynn. I read the article and it would comfort me were I younger (I am 57) and did not have all the other medical issues. Great information...thank you for sharing it.
janet

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