My Gilenya First Dose Experience

Gilenya, or Fingolimod, is the first approved oral disease modifying drug for MS.

My Gilenya First Dose Experience

Postby ovifan08 » Thu Feb 07, 2013 8:23 am

I took my first does of Gilenya at 8am yesterday morning. I was being monitored at a Concentra Immediate Care center. I wasn't sure what to expect, but was happy to see I wouldn't' be hooked up to a heart monitor or anything. With my anxiety, I'm sure i would have been watching that thing like a hawk! They started off with an EKG, then did checked my heart rate and blood pressure both sitting and standing. My BP was a little high, but it was due to anxiety I'm sure since its normally perfect. Then the time came to swallow the pill...Here we go!

For the first hour, I was checked every 15 minutes. They checked my heart rate and BP both sitting and standing every time. After the first hour I was checked every half hour until the 6 hours were up. My heart rate or BP never changed! I was expecting at least a little drop in heart rate, but i was fortunate i guess. Hopefully that is a sign that this could work for me! I was asking the nurses there and they said they have never had a bad First Dose Observation. They had a few people get up and walk around the facility to get the heart rate to increase a little, but that is it. They mentioned changes usually start to occur after the first half hour, so I also took that as a positive sign.

Throughout the 6 hours I felt fine. I was definitely anxious at first, but that faded after a couple of hours. My wife and I passed the time playing cards. I was able to eat and drink whatever i wanted and was even able to walk around. I just wasn't able to leave the facility.

By the evening i was really tired though. I'm not sure if it was due to the Gilenya or not because i was out late the night before and had to get up early for my first dose. I will keep you updated on if the tiredness hangs around. I took my second dose at 7:30 this morning and went to work. So far all is well!

Also, I have started an MS Support group on facebook if anyone is interested in joining. It is at

Thanks for reading. I'll keep posting updates if you are interested!
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Re: My Gilenya First Dose Experience

Postby ovifan08 » Mon Feb 18, 2013 12:01 pm

13 days in and I am still feeling great!
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Re: My Gilenya First Dose Experience

Postby DougL » Mon Feb 25, 2013 11:33 am

good to hear, keep it up!
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Re: My Gilenya First Dose Experience

Postby Brichardson22 » Sun Jun 05, 2016 8:59 pm

Are you still on Gilenya? I start my FDO Monday morning and would love to hear how the medicine has been - good and bad. Thanks!
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