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.

July 28, 2011

Goodbye Rebif

Filed under: Uncategorized — by mseds @ 8:12 pm
Tags: ,

In a modest white house,

There was a fridge with blue containers

Stocked with hated Rebif shots

and a woman sick of dealing with…


Evenings wasted each week – three

The need to drink water til the constant need to pee


Heat packs and popping two Aleve

Itchy shot spots nothing could relieve


Shot spots that were also black and blue

Constant fears of waking with the flu


An auto-injector that’s too powerful

A medicine’s whose effectiveness is rather doubtful


Goodbye hate and fear.

Goodbye drinking til my pee is clear.


Goodbye Aleve.

Goodbye time thieve.


Goodbye auto-injector contraptions.

Goodbye injection site reactions.


Goodbye flu-like side effects.

Goodbye mounting skin defects.


Goodbye six full sharps containers that live on top of my fridge.

(Oh wait, I’m stuck with those since no one will take them from me!)




Here I come, Gilenya! Hope you and I get along well!

(Obviously inspired by, “Goodnight Moon”)

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