Wednesday, 19 September 2012

The drug-decision

Today I had my 10th vial of blood taken since my diagnosis less than a month ago.  Yes, I am counting.

The two tubes today were for my "interferon screen" pre-drug testing.  I will be starting a class of drugs called Beta Interferon 1a - or commonly branded as Rebif.  This drug, which is just one of many to choose from, will modify my body's T cell responses - make them less aggressive and harmful to my immune system.  During an MS attack, my body's immune system gets activated and immune cells (T cells) go into destroy mode.  These activated T cells attach to my blood-brain barrier, a layer of tightly packed cells that normally protect the central nervous system from harmful substances.  When the T cells attach to the blood brain barrier, they are able to squeeze their way in.  Once in, they attack the myelin covering the nerves in my brain and spinal cord.  That signals an attack.  An attack, or relapse, by definition, has to be a minimum of 24 hours, and include physical disability of some form.  My two most recent relapses have lasted 2-3 weeks each.

This drug needs to be injected 3 times a week at home.

And there will be side effects - flu-like symptoms, injection site reactions, liver or thyroid problems (I'll need to really reduce the wine now!), allergic reactions and sometimes, depression.

And, here's the fun part - I get to be one of those people at the blood lab with a freaking standing order.  Yup - all this testing happens once a month.

But - these drugs have been proven to reduce relapses by 1/3 and reduce the number of clinically-definied lesions on MRI.

Once the results from today's blood tests are back, I collect my $30,000 prescription and a nurse will come to my home to train me on giving myself the injections. 

At today's clinic education (aka: pick your drug) session I met a group of newly diagnosed MS patients.  There was a new mom who was only diagnosed yesterday, a woman who has only been living here for a couple months and had no idea what was happening, people who didn't have extended drug coverage and could not afford this.  It's scary stuff.  There is so much real, raw emotion in a process like this.  When dealing with a upsetting diagnosis, you don't immediately think about finances and drug plans, and rotating injection sites on your body.  There is so much to take in, understand, and accept.  Things I never would have thought about 2 or 3 weeks ago.

Emotionally - I think today was my first vividly real moment of sadness.  The tears came as I was driving home.  Suddenly, there I was - looking at my life.  Looking at what was happening, where I was going.  Seeing myself as somebody else - fictional and dream-like.

I am going to allow these feeling of sadness to stick around for a while - I think they will do me some good.  Because, with sadness comes relief.

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