Tuesday, 26 September 2017

The nature of the beast

Once you have MS, you can't get rid of it.  I can never be "MS-free."

The objective, clinically speaking, is to stop it from getting much worse.

I had my MRI results and physical exam today, and there's good news and bad.  Or perhaps more accurately, good news and expected news.  Because we all know that MS usually is a progressive disease.

There are no new lesions in my brain or spinal cord.  Great news!  But, the ones I already have are doing enough damage to me physically that I need to change my disease management plan.  My physical exam corroborates the daily symptoms I experience, and shows that more progression is happening.  This may correspond to the results of my last MRI which did show brain changes.  The technology doesn't always match the symptoms.

A new medication, Ocrevus, just approved by Health Canada, will be my new poison of choice (assuming my extended health benefits will pay the $80,000-ish per year.  Which they should).  With any mega-expensive medication there is a lot of paperwork and time involved, so I don't know when it would begin.

I'll be one of the first on Ocrevus not in a clinical trial.

Ocrevus is a humanized anti-CD20 monoclonal antibody given by intravenous infusions.  This means it acts as an immunomodulating drug by targeting and removing potentially harmful B cells (a type of white blood cell that healthy people need and everyone has, but this medication removes them in people with MS to try and wipe out and "reset" the immune system).

So, it's a scary medication, and will involve much more testing and monitoring.  There are many side effects that will come into play that I haven't had to deal with yet.  But I've had this medication in the back of my mind for years, and followed the clinical trials.  I just never felt ready enough to take this next big step.

But it's time now.  And I feel more ready.  I really want to face the progression of my MS with some force.