Life with MS & EDS

July 30, 2011

Gilenya – Day One

Filed under: Uncategorized — by mseds @ 11:09 am

I had the most relaxing, wonderful day yesterday. Novartis arranged for me to do my first Gilenya dose at a local urgent care center.  I was told to arrive at 8 a.m. and plan to stay for 6 hours.  I could bring snacks, books, DVDs, etc., but couldn’t leave until the 6 hour observation was over. That sounded like a nice get-away to me! I packed season four of The West Wing, some snacks, 2 books, my laptop, and my daughter’s Girl Scout vest with all of the badges I needed to sew and off I went.

The folks at the urgent care center were really nice. The nurse took my baseline blood pressure (100/70) and my pulse (88 or something like that).  They check things both sitting and standing.  Then the doctor came in with the first Gilenya pill. Nice guy with a good sense of humor. He asked if I had any heart issues and I warned him of my dysautonomia experience and history of low blood pressure. Then he handed me a pill and said to savor it since it’s worth $125. I swallowed it and was off to my waiting area, a room at the end of the hall with a reclining chair and TV with DVD player, but no cable.  They even gave me an iPad to play with during my stay.

During the first hour, the nurse checked my pressure and pulse (all checks are both sitting and standing) every 15 min. Hour two was every 30 minutes. I went 60 minutes during hour three.  Hours four and five were every 30 minutes again with a final check at the six hour mark. My pulse and blood pressure both dropped, but I didn’t feel dizzy or sick in any way. My pressure dropped to 84/60 (or something in that ballpark) and my pulse went into the 50’s, but I felt fine. I think my body is used to compensating for low blood pressure. For a very long time, my normal was around 90/60. By the sixth hour I was back to 100/64. The doctor called my neurologist to make sure he was okay with how things went. The neuro gave the green light for me to continue on Gilenya. The doctor urged me to stay very hydrated. I needed to drink, a lot!  Unfortunately I learned that my decaf coffee didn’t count, which makes me very sad. The dehydrating chemical in coffee is still in decaf.

I wish I got to stay there longer than six hours! It was the most relaxing and productive day I’ve had in ages. I sewed on about a dozen Girl Scout patches, enjoyed watching The West Wing, my awesome husband brought me lunch from Saladworks, and I got to play with an iPad all day. For the profit Novartis is making on Gilenya, it would have been nice if they threw in a massage, but I shouldn’t complain. It was a great day.

I did the first dose on my own this morning and feel fine. Along with drinking a lot, I was advised to take the pill in the morning. I generally prefer to take medication in the evenings, but blood pressure generally gets lower at night, so that it not the smartest time for me to take Gilenya.

I asked the doctor how many patients he’s seen and it’s been well over 100. I asked if anyone had a reaction to the first dose. He said there was one gentleman that wasn’t honest about having chest pains. This person had a reaction during the first dose and was told to stop taking the medication. Everyone else he’d seen was fine. That was comforting.

So far, I definitely like Gilenya! I’ll try to keep you posted on how things are going.



  1. This sounds rather civilized! Best of luck.

    Comment by Posey — July 30, 2011 @ 5:44 pm

  2. Gosh, how wonderful that the setting provided rest, relaxation, productivity etc. I am sure environment affects how ones body reacts. Shame about the lack of massage, that certainly would have been the icing on the cake.

    I am sorry you have MS obviously but taking a pill sounds so much less stressful than the Rebif regime.

    I sincerely hope this new med, helps and that you have no adverse side effect.
    (apologies if I have my effects & affects mixed up)

    Gentle virtual hug from the UK.

    Comment by Achelois — July 31, 2011 @ 8:31 pm

  3. hello i just read your post on the first dose. I have rr ms and I am considering takeing this pill. I have medicare and my reitried husband BCBS I also have medco for my pharmacy. I am under standing that the cost of this med is $20 every 90days and will only cover 3 90 refills per year! after that its 3200.00 for the next 28 day refill I can not afford this. i do not take any meds because i just cant bring myself to injection if you could response and let me know the $$$ part of it I would appreciate it so much.

    Marci Cummings

    Comment by marci — November 15, 2011 @ 4:13 pm

  4. Hi Marci! I have BCBS and use their mail-order pharmacy, too. For me, the deal is that I pay $70 for a 90-day supply. They basically ship quarterly and even call to remind me when it’s time to refill. It seems strange that they’d only cover 9 months, not 12. I’d call them to find out what the deal is with that. Hopefully that’s not the case. There are plenty of people who need medicine every day of the year and they do tend to cover the full year. Perhaps it’s that they consider the first 3 months the initial Rx and the 3 “refills” are the other 9 months. That’s my guess. I don’t blame you about avoiding the injections. I don’t miss them one bit! I must say that I’m enjoying Gilenya and that things are going well. No side effects! Of course I won’t really know how things are going until next year’s MRI when I get to find out what my brain and spine are up to. I have high hopes that Gilenya is keeping things stable. Let me know what you find out! Hope this helps some.

    Comment by mseds — November 15, 2011 @ 4:23 pm

  5. thank you for your reply I am going to go ahead and schedual the EKG and eye exam as planned by my neuro I hope the $$ problem is like you said. I am looking forward to feeling better.
    thanks again

    Comment by marci — November 16, 2011 @ 9:39 pm

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