Ques re: Gilenya and Tysabri

[doublevision1]

For any of you who have previously been on these DMDs: have you had to discontinue treatment due to side effects and if so, please describe. If currently on one of these meds are you having any troublesome side effects that are so bad they cause you to consider stopping treatment?

[rendean]

I do know of 2 cases of extremely low neutrophil counts while on Gilyena. One caused a death (PML if I'm not mistaken but definitely possible ) and the other a life-threatening opportunistic infection.

Not on the top of my list.

as an aside, on Ty, my liver enzymes are checked monthly at my TOUCH center as well as a CBC and other blood  work as warranted including a renal panel every 6 months or so.

Good luck on your decision making process!

Ren

[doublevision1]

Thanks Guys for your replies, I started a new thread re: today's discussion with my neuro on all of this.

[kwarendorf]

Hi DV - I was on Tysabri for 20 months. I had no reactions of any kind.  I would still be on it except A) I converted to JCV + and B) it stopped working.

I had about a three month hiatus before starting Rituxan, I think that had as much to do with waiting for insurance approval than clearing the Tysabri ou.

Kyle

[Lulu54]

I've been on Tysabri for 28 months and continue to test negative for the JC Virus, so it is a no-brainer for me. They screen for JC and liver function every six months but would do it more if I reguest.

Kat mentions what I like best - besides that it is working for me - is this is just one day a month that I set aside to do my infusion and then I don't think about it again for another 27 days. I don't have that constant reminder with daily injections that I am sickl.

And honestly, I can't very well cheat on this one- it's pretty obvious to them if I were to be missing my appts.

[torikat32]

I was on tysabri for 9 months till my liver decided it didnt like it anymore but I loved the drug went from using a cane to nothing. I just started gilenya yesterday so jury still out on that. Its been 7 months since being off therapy and feel like crap the fatigue is overwhelming and my balance is bad dragging foot again so should be using cane again just not mentally ready for it.

if your jc neg I would go for the tysabri as long as insurance covers it 1 hr a month and done so easy.

best of luck
kat