Friday, 26 September 2014

Sometimes it's ok to give up

After I wore the Holter heart monitor for a day, my Neurologist wanted to see how I'd feel off the medication. 

* Insert huge thanks to the clinic nurse who has shown incredible care over the past couple weeks.  She truly went beyond what I ever could have expected or imagined.

It's tricky to "take a break" from Gilenya, as if you stop taking it for longer than a certain number of days, you need to redo the first dose monitoring rigmarole.   I tried 3 days off the medication, and definitely felt better.  The chest pressure, shooting pains and breathlessness pretty much disappeared.

Which is great!

But also kinda sucks. 

Today I made the decision to stop Gilenya all together.

This pill was supposed to be my miracle drug.  The drug that was going to make me feel normal, and vibrant, and symptom-free.

So now what?  Go through the process of deciding on another new medication, completing all the preliminary tests, figuring out if I have financial coverage? 

And the side effects - no thanks...

I can't be out of commission while attempting to parent two boys.

The temptation to go back on Copaxone is pretty strong right now.  It's familiar and did its job (sort of).

I did just find out I have full coverage for Lemtrada infusion treatments, which is something my Neurologist wants me to consider.  But this mega-drug is scary, and I am not sure if I am psychologically ready for it.

That's where things stand for now.  I see my Neurologist in 10 days to discuss/debate/run for the hills...!

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