Monday, 26 May 2014

This medication thing...

We had 6 months to think, assess, and figure out the next course of treatment to consider.

My brain MRI results indicated no change, but my spinal symptoms have been brewing, and have become daily, and worsening, reminders that things are not okay.

Six months ago, the last time I saw my Neurologist, the only treatment option to progress to was Gilenya, an oral medication.  An upgrade from my daily injections, and with proven potency, but with nasty side effects involving the heart and eyes. 

I have literally spent 6 months researching, thinking, and trying to make some sort of coherent decision.  I was this close to just accepting Gilenya as my fate.

I had a full physical neurological exam today, and even that is no longer normal.  I am now exhibiting some classic reflex and sensation signs.

The Hoffman sign occurs when the middle finger is bent back and flicked (while I don't look), and the thumb and index finger jerk instead of remaining still.   In MS, when there is weakness and spasticity in a limb (as I have), the reflexes will be increased and a pathological reflex will be present.  If there is ataxia in a limb, the reflexes may be decreased. The relative presence or absence of reflexes can serve as confirmatory signs to document a lesion in the spinal cord or parts of the brain. 

My reflexes were wild and uncontrolled.  Not normal at all. 

I also couldn't balance on two feet with my eyes closed.  I fall to the left.  And I couldn't perform the "drunk walk" (walk in a straight line, heel to toe, heel to toe) without needing assistance.

Add that to the never-changing spinal symptoms, and it was decided to put in an application to see if my extended health plan will cover the cost of Lemtrada (alemtuzumab). 

Lemtrada is an IV infusion drug administered only two times.  When starting, it is administered daily for 5 days, then one year later for 3 days.  Then, potentially, nothing ever again.  It is not a cure, but hopes to halt disease progression.

Doesn't that sound nice?

But, as with all potent drugs, come the side effects.  Lemtrada is essentially a drug usually used for leukemia.  It is an immune "reboot" so to speak.  It kills off certain parts of your immune system, and it is left to readapt, hopefully without the auto-immune disease properties of MS. 

The side effects are many.  Life altering ITP (lowered platelets, meaning the blood cannot clot), kidney disease, and thyroid disorders.

And monthly blood and urine tests for FOUR YEARS after the treatment stops.  Essentially making that 5 years.  Holy smokes.

There is no messing around with Lemtrada, but when it works, it works.  People report feeling "normal" again. 

It literally has just been approved by Health Canada, and only 36 people in BC have been treated with Lemtrada in clinical trials (more since its Health Canada approval)

For the first time in the almost-2-years since my diagnosis, I am seeing the massive advances into medication research, and I feel genuine hope.

First step:  the paperwork from my Neurologist to see if the treatment will be covered.  If yes - I'll most likely do it.  If not:  we reassess (again).  There are still months to go in this process.

And we wait, with bated breath.

(And the injections, still).

1 comment:

  1. aw, Sarah. Thinking of you. While we have 2 totally different diseases, I can still somewhat relate to the progression of symptoms and the medication debates. I hope Lemtrada is covered for you. xo

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