[jnewk]

Hi MS Peeps

My neuro did labs prior to prescribing Tacfidera (which is sitting in front of me unopened). the tests came back positive for the JVC virus. She still thinks I should take the Tacfidera even tho there is a risk of PML.

have any of you test positive for the JVC virus and take Tacfidera anyway? I would appreciate hearing your thoughts and experiences.

Thanks

Janet

[Kitty]

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.

[SallyC]

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.

[jnewk]

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!

[jnewk]

Originally Posted by Kitty

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.

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

[NurseNancy]

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

[Debbie D]

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?

[jnewk]

Originally Posted by NurseNancy

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

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

[jnewk]

Originally Posted by Debbie D

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

[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