Multiple Sclerosis (MS) Support Group

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HeyNow 12/09/2010

Is anyone out there currently on Fingolimod/Gilenya or thinking about starting? I just made the decision to start taking this medication. My doctor has given me several referrals for an opthomologist and dermatologist for pre-screening tests before I can start.

I have previously been on Avonex, Copaxone, Rebif and Tysabri in that order. I have been off Tysabri for about one year after having twenty-four infusions and in the time I have been off it I have developed seven new lesions in my brain. That was very disappointing news and led me to make the decision to start fingolimod.

I was just looking for others who are in the same boat I'm in with this and maybe we can communicate about it and exchange ideas or just support in general.

Thanks.

deleted_user 12/09/2010

I've been on Gilenya for the past 4 weeks. I had the eye exam and an EKG before starting. The one thing I wasn't overly ready for was all the blood work after the fact! So far I've had 3 blood draws (day of and then every 2 weeks after). I'm having more because I'm having elevated liver enzyme levels, not enough to pull me off but just enough to keep sticking me!

Would love to stay in contact and see how other people are doing!

HeyNow 12/11/2010

Thanks JustaSmallTownGal! How was the first day for you? Did they keep you under observation for about six hours?

deleted_user 12/11/2010

Never even heard of it, is it for MS?

deleted_user 12/11/2010

They kept me for 6 hours. I definitely recommend dressing extremely comfortably and bringing a laptop, headphones, and a ton of stuff to keep yourself entertained with. At the MS center I go to we just got put into the waiting room and had a nurse come and check on us.

Essentially all that happens it that they check your blood pressure every few hours. My supervising nurse was very kind and brought me and the other girl that were starting that day some muffins. But make sure you bring food and drink with you.

You'll get your first 2 week supply that day too. I'm not sure if they all do this or not but that was the day I got my blood work orders too. I had my blood drawn that day. 2 weeks after starting. And then the schedule is supposed to be once a month for 3 months and then once every 3 months for the first 2 years. After 2 years once every 6 months.

I'm having my blood drawn essentially every two weeks still because my liver enzymes are elevated. It's not enough to pull me off the meds, just enough to worry me a little. It's too much darn work to get on this stuff for me to have to go off of it now because of my silly liver. C'est la vie.

As for the rest of the follow up, I'm having another eye exam in 3 - 3 1/2 months and I come back to see my neuro and CNP 3 -4 months after.

Please please please do not hesitate to ask any questions you might have about this whole process, etc.

Best of luck to you. Let me know how your first day goes!

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