jules1986 11/04/18
Last reply 1 week ago
Gilenya

Hello,

I was recently diagnosed with RRMS in February. I’ll be starting my first dose of Gilenya this Saturday. I’m feeling a bit nervous, because it makes your heart rate drop and once I’m on medicine it’ll make it more real that I’m going through this. Overall I’ve got a good handle on things. I have more good days than bad.

Has anyone used Gilenya before and if so what are your thoughts? I know everyone’s disease process is different so we’ll all react differently but I would like some input. Thanks in advance!

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cammo
2 weeks ago

@jules1986 I have been on Gilenya for over a year now. Dont worry about the initial dose. It is a precaution as there was one death after the clinical trials. Percentage wise it is pretty slim that you will have any reaction.
Just be prepared to be bored while sitting around in the hospital as they take observations. I recommend taking a laptop/iPad and watch some shows.
The Gilenya has been really effective for me. I have become “stable”, which means I have had no new lesions in the last 6 months. I have had new lesions since starting but it takes a few months for the drug to kick in and I haven’t had any clinical relapses.
I had one side effect which was raised liver enzymes. This is a common side effect and my LFT’s returned to normal after 6 months.
Anyway it is much better than daily injections or infusions. Just a pill a day.
Good luck and take care.


chrisb
1 week ago

I agree bring a laptop or book!I was on gylenia for about a year,then switched me to Tecfidera,cause something was high on my blood work


grandma
1 week ago

Whatever the DMT the fact that you’re getting something is great, good luck for Saturday, reply to emails, fill in tax forms, do whatever you put off at home cos it takes too long, time will fly😍

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