My multiple sclerosis journey started back in 2001. Diagnosed the day before my birthday, the head of Neurology informed me that I had MS, handed me a script for Avonex and told me that I could find out more on the Internet. He added that I could start on the medication whenever I felt ready and that was the end of it. He walked out the door and left me to process what he had just told me. In my devastated state, the only thing I took from that appointment was that I had time. When things are really bad, the doctor says you have to start treatment right away but this doctor said when I’m ready. There’s time.
A year later I sat in the office with a different neurologist who could barely disguise her disgust for the way that I had been diagnosed and the subsequent lack of treatment. I walked out of that appointment with Avonex ordered, an appointment for a nurse to show me how to administer the medication and a sense of urgency. The time was now. My MS had to be treated now. No time to wait.
Over the next fourteen years, that’s what I did. I took my medication faithfully. It became much easier once I switched to Rebif of course. During that time my condition remained stable. No new lesions, no exacerbations, nothing. Even my current neurologist refers to my MS as ‘taking a more benign course.’ Slowly but surely the urgency began to fade. Which is where I found myself six weeks ago when disaster struck. Something went wrong with my shot. There was lots of blood and a huge bruise. I haven’t taken my Rebif since then. I just can’t face it. I’ve hit the medication wall.
Now what do I do? I finally took that initial neurologists advice and searched the Internet. As it turns out, I’m not alone. A compilation of literature shows that almost half of patients taking medication for chronic conditions will stop taking their medications two years after being prescribed.
Some studies have shown that up to 40% of MS patients who stop taking medication experience some form of relapse. The statistics are grim but the solutions are scarce.
It can take months to get in to see a neurologist to switch medications. I’ve made an appointment six weeks from now and I’ll be switching to an oral medication although I’m terrified of the risks. What do I do in the interim though? How do you get back in the saddle once you’ve fallen off? Every night I stand with that auto injector in front of me and every night I fail. I need to regain that sense of urgency before I have an exacerbation. I just don’t know how.
Can you relate? Have you hit a medication wall?