Round three of my experimental treatment complete. And a
complete failure.
As grateful as I was to have the opportunity to try this
treatment (it had been financed by a very generous anonymous donor through
Toronto Western Hospital after the government and private insurance refused to
fund it), and had been deemed successful for a fellow ECD patient in the US) it
wasn’t a lot of fun and I’m relieved that it’s over. For background on the
difficulties of getting medications covered for rare disease, please take a
listen to this CBC interview I did last year if you’ve not already heard it.
You’ll be very grateful if nobody you care about is ever saddled with an
illness that’s classified as rare. http://www.cbc.ca/thecurrent/episode/2011/03/11/rare-diseases/
One of the common side effects listed on the Actemra
website/monograph is high blood pressure. Of course my body decided to do the complete
opposite – the nurses who visited for the days following each treatment would
get a look of shock in their eyes when taking my blood pressure. “How the heck
are you still conscious Sandy?” That low. “Let’s get you to the hospital
if it drops one number lower” kind of low. Fainting and tumbling down the wood
staircase kind of low. I had started fainting again before the treatment,
and this certainly wasn’t helping. I’ve scared my poor daughter out of her wits
finding me at the bottom of the staircase in the middle of the night.
I almost didn’t even get the third infusion last week. The
nurse took my blood pressure. And again. And a third time. It had dropped
during the hour long infusion twice before and she was quite hesitant to
continue. I however, wanted to at least see the three month trial continued to
the end – maybe we’d be third time lucky? I asked my daughter who’d driven me for
this infusion to say something that was sure to get me riled up – and she
quickly piped up that there was something she’d been hiding from me. She’d gone
ahead with the tattoo she’d previously promised to not get while I was still
here. Sure enough, my blood pressure went up jussssst enough to proceed (and
for the record - no tattoo as yet, but her quick thinking was quite
helpful!)
What other delights were in store? Third day in after each
of the first two doses I clogged up the shower drain when a good handful of
hair fell out. That was accompanied by a heart rate that was even more
irregular than usual. Then came the 5-10 days of mouth ulcers each month – making
eating and talking quite uncomfortable. Fevers, flu-like symptoms, blurred
vision, fatigue – all especially not welcome as I was trying to pack our home
for the move last week. And still no home to go to, I'm in
temporary quarters (very welcoming quarters, but no home of our own on the radar yet). Bet you’re begging to trade places with me at this point!
And NO pain relief – which was the objective of this
experiment. I’d hazard to say it might even have worsened over the last months.
So came the expected decision Monday at the hospital.
And where do we go from here? Not far apparently. That’s a story for
another day.
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