Getting ready to start Gilenya

[Strawberry Shortcake]

I was diagnosed in 2005. I started on Avonex at that time, then got pregnant a year later. After I had the baby I had a bad relapse, my neuro (at the time) didn't treat it. I got a new neuro who put me on Tysabri because the Avonex didn't seem to be working anymore.

I've been on the Ty for 6 and a half years and I LOVE this drug. I've been unable to walk since my first neuro didn't treat the relapse but have not had a relapse in all the years I've been on Ty. My JCV Titer is starting to scare me, so I'm switching meds.

I saw my neuro this past Monday and had most of the tests done. I have to make an appt. for the eye exam and go back for 2 labs that they didn't do. I have my last infusion on the 19th and then will start the Gilenya 4 weeks later.

I'm sad to stop the Ty, I started the infusions before my now 7 year old could even walk! I know the nurses now, they're part of my life. I'm really hoping that stopping the Ty isn't going to put me into a relapse.

Is that something that usually happens when switching drugs? Even in the 9 years I've had MS I have never had a relapse and gotten IV steroids. I know I've been getting an IV every month for years but IV 'Roids scares the heck outta me! I don't know why, guess I figure the needle hurts more or something.

Anyway, does anyone have any words of advice?
Thanks!!

[poppydarling]

Did you already stop the Tysabri? I had the worst, most debilitating relapse of my life after coming off it cold turkey after a severe allergic reaction/breathing problems. The relapse occurred 4-5 months later, and during that time, I had no steroids or any other DMDs. Doc admits mistake now

I did a little research and found out that others have experienced the same thing — in fact the drug company has changed some of the fine print to warn about coming off this drug cold turkey.

Definitely discuss making the transition with your doctor — I wouldn't want the same thing to happen to you or anybody else.