Well, I have not been tested for the JVC virus. It wouldn't matter if I tested positive or negative.....I've read and heard too many negative things about Tec to scare me away. It just seems that all the "new and improved" MS meds have such long lists of side effects that seem to almost be worse than anything I've experienced with MS by itself.

For those who find it works - more power to you! I'm happy you found the magic bullet. I'm just not brave enough to try.

Just 3 words, Janet....I would not!!. But good luck in whatever
you choose and good wishes..

Let us know how is goes for you.

Thank you Sally. That's what I'm feeling but I always like to check with others about a big decision. I appreciate your reply. I hope you have a wonderful day Sally!

yes kitty that was my feeling as well but the dr. tried to convince me it would be "ok". she said unless you are the kind of person where anything can go wrong you will be fine. Apparently she missed the part about rheumatic heart and aortic valve replacement surgery, or the part about ovarian cancer, or absessed gall bladder and the countless other "lucky" things that have happened in my life. I appreciate your frankness and I'm feeling better about saying "no" ....
Have a great day Kitty

oh my gosh, you have been thru so much.
i would do a whole lot more research on this med if i was in your position and considering it.

you have to weigh the benefit vs the risk.
and ask yourself if your brain if worth it. if i was very symptomatic with my MS and willing to try anything i might do it. but, just because your dr says she "thinks" it's ok...that wouldn't be enuf to sway me. IMHO

I'm afraid of most of the new meds, since they are strong immunosuppressants.
I'm sorry that you have these very serious challenges...

IMO, I don't think I would risk it if you're positive on the JC...PML is terminal when activated, isn't it?

Hi Debbie....yes that is my understanding as well that PML is terminal. Why risk it? No thanks.

Thanks for the hug!

janet

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

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........