Tuesday, August 25, 2009

My MS Story Chapter 5 – Doc, can’t you just prescribe some pill I can take for this?

Morning (self)
Image by paalia via Flickr
Get up…eat breakfast…shower…brush teeth…get dressed. Wait, it feels like I’ve missed something. Oh ya, stick a needle in my thigh, or belly, or butt and inject an acidic solution under my skin. How could I have forgotten?

I continued the daily Copaxone injections for almost six months. Then one morning I read online (is there any other way to get the news) that the Copaxone trial for PPMS had been cut short due to poor results. I thought to myself, "Just because the drug failed to meet certain statistical criteria doesn't mean that I'm giving up on it. I’ll stop taking it if and when I determine that it is not working for me. I’m sticking to the plan that my doctor and I came up with." I loaded the syringe into the autoinjector and lifted my shirt so that I could inject into my belly. According to my spreadsheet it was a belly day. Those were the worst.

For some unexplained reason the autoinjector simply would not discharge. Was it the spring mechanism? Was the syringe not correctly loaded? No, the problem was in my head. I was hesitating…

Up until that very moment I was completely committed to the course that my doctor and I had set to try Copaxone for a year, as I had with Novantrone, before making an assessment of its effectiveness. But the news of the failed trial, coupled with the ever so slight hesitation I experienced before pulling the trigger on this shot, initiated a chain of neurons firing in my brain, resulting in an instantaneous and irreversible decision. This was impetuous Mitch, making one of his rare appearances. In about 2 seconds I went from committed to this drug to done with this drug, that minute, forever. Did I mention that I hated those shots?

(Photo credit: Wikipedia)
I need to pause here and address Copaxone in more general terms. Many folks take Copaxone shots every day and are either tougher than I was or simply don’t feel the discomfort that I did. Copaxone is improving the lives of people with RRMS. It is the most popular FDA approved disease modifying treatment for MS. If you are considering Copaxone, please don’t give too much credence to this one account of the injection site reactions. But if you do choose Copaxone, and it does feel like a bee sting every day, then because you read this post maybe you won’t feel like everybody fed you a fairytale. And one more point, if I had to endure a shot that feels like a bee sting each day to make my MS better, or even stable, I’d do that in a second. I just couldn’t do it when it became apparent that Copaxone wasn’t working for me, or for other people like me.

My first two treatment attempts, Novantrone and Copaxone, were big time, FDA approved, expensive, intrusive treatments. Although they were not indicated for my type of MS, they were very legitimate attempts. After these two failures I began to move into the more fringe treatments- drugs that had only anecdotal evidence of controlling MS at all, let alone PPMS.

My neurologist and I always have what we refer to as an “on-deck” treatment. This is the treatment that, once the current treatment fails, will be the next treatment we’ll select for failure. While I was taking Copaxone the on-deck treatment was Methotrexate, which is a mild chemotherapy agent or potent immunosuppressant drug (you choose) used successfully for Rheumatoid Arthritis, and administered orally- yes, a pill. No IV bags. No needles. No autoinjectors. Oh boy!

Forgive me, because I’m about to commit the storyteller’s ultimate faux pas. Instead of building slowly toward the exciting climax of the Methotrexate story, I’m going to jump ahead by a year and reveal the ending right now. If this will just ruin the fun for you, and you don’t want to know the results in advance, then this would be a good time to cover your mind’s ear, so you can’t hear your mind’s voice read the next sentence. ***The Methotrexate didn’t work*** OK, for those of you who plugged your mind’s ear, it is safe to listen again. I revealed this ending because the more interesting things about the next year in my MS life are not so much related to the drugs that I took, but to the changes going on with my body. Year two was the first year of significant, noticeable disease progression.

I took my first Methotrexate pill on December 8, 2002. That was 1 year and 47 days after my diagnosis. I kept an MS Journal, and still do. In my journal I noted that in this first year (plus) after official diagnosis, my leg weakness had slowly progressed. Although I was a regular at the local gym, I was no longer able to do strength training in my lower body. I noted in my journal that there had been zero impact to my upper body. Upper body weight training was unaffected. Kayaking was unaffected, etc.

My job as a design engineering project manager required me to spend significant time walking around our clients’ plants and job sites, all over the country. By the end of that first year I could no longer wander around these sprawling factories at will, although if I was clever about it I could still make a couple of tours each day and accomplish the rest of what I needed to by studying photographs and drawings, and by relying on the observations of others. I was compensating quite effectively for my slight lack of mobility. My job performance had not yet suffered.

So the first year’s events were mostly related to diagnosis and aggressive treatment attempts. The degree to which MS had affected my day to day activities was relatively minor. If I hadn’t chosen to disclose my MS diagnosis to you at that time, then you wouldn’t have known anything was wrong, yet.
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  1. Your blog is awesome. I hope it is cathartic for you as well. Your is a story that needs telling and you do it so very well. I’ll be checking back often.

  2. Mitch - great blog man. Will have to do lunch sometime. Give me a call at work and I will swing by the house with Jeff Grant.

    Go Sox!

  3. Hey Mitch, great use of your storytelling skills. Even though I know how the saga turns out, you have me wanting to read more.

    We've definitely followed a somewhat similar course down the PPMS road. I didn't do copaxone, but did do Rebif, and I skipped Novantrone. I did methotrexate, but as intrathecal (spinal) injections, not orally.

    It's incredible the crap we've been through, isn't it? And still we go round the Mulberry Bush...

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  5. Hey Mitch, me again...

    Just watched your new video, and was much impressed. That ibot really is something.

    I've actually been to "Two Lights State Park", when visiting some friends who lived in Portland. Have you ever been to "Inn by the Sea"? They make the best lobster bisque I've ever eaten...

  6. Bags, glad you like the blog. It is indeed proving quite theraputic, both because of the content of what I'm writing and because it gives me something to look forward to during the week.

    Scott, glad you like it. Lunch- yes!

    Wheelchair Kamikaze, we sure are put through a lot, but MS patients of years past were just sent home to rot, so I guess this is better than that (maybe). I've only dined at Inn by the Sea once, a wedding anniversary a few years ago, and the ONLY thing I can remember about that meal is the Lobster Bisque, mmmm.