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

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.

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........

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

Thank you NurseNancy...yes I've really been thru way too much. I called Dr and told her I wouldn't take it after all. She was ok with it (per her nurse lol). Partly, I think because 2 nights ago I had a fat seizure resulting in a face plant on my concrete floor. Hurt my knee and face. So she has prescribed Keppra and of course, called the DMV. Its just too much sometimes I swear. I live alone and don't have anyone to drive me around. And the idea of bussing it around here (Las Vegas...crappy bus system. In fact, crappy everything). And the thought of Tacfidera possibly giving me severe side effects that "might" go away in a couple of months or might just kill me (yes, PML is fatal once it comes to life) just was the topper.

I do really appreciate everyone here chiming in with their experiences, thoughts, questions, etc. Helps to not feel like I'm in this alone.

Let's see what tomorrow brings.....lol
thanks again
janet