Wednesday, 13 August 2014

Time to get started

Back from vacation, and back to work.

And by work, I mean - getting ready for my medication switch.  Months in the making, hours of research and appointments - it has felt consuming.

It all starts tomorrow. 

My preliminary tests on my heart and eyes, plus blood work. 

If all that is fine, I will fill my new prescription (pills!...eeeee!) and then go in for a first-dose hospital observation as soon as possible. 

Gilenya can cause heart issues in the first few months, especially with the first dose, hence the day of hospital monitoring.  It is expected that my heart rate will drop dramatically.  This visit ensures I am in a proper medical facility if it drops, well, too much.  This is a temporary change, and over the course of a month or so, should revert to normal.

This, plus liver function, and complete blood count tests will be a monthly occurrence while I am on this drug.  But that's the same as almost all MS medications, so nothing new.

My lymphocytes - a type of white blood cell in my immune system - will be mostly removed from my blood by Gilenya.  That's the mechanism of this more-powerful drug.  So if I don't go out too much at first, or am always slathered in hand sanitizer, that's why.

Gilenya also increases the chances of macular edema occurring.  I will be closely monitored by my neuro-ophthalmologist (luckily - at the same clinic) to watch for this.

I've had to stop taking my anti-depressants, as they are contraindicated with Gilenya (potential heart issues).  I have been through a few anti-depressants over the past years, and this one seemed to work well, even with a very low dose.  Whether or not it gets replaced with something else is yet to be decided.

One thing at a time, Sarah...

Despite these new anxieties, I am so excited that I only have a couple shots left to finish (I could have finished them yesterday, but why throw away very expensive meds?!).

Today, I am grateful:

I don't have a lock box in my fridge for my needles anymore!

I can throw away my sharps bins!

I have an excellent health care team making this process work so well.

We are going to the mall to buy special popcorn!

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