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Despite all of the media optimism about how this is “a great time to have MS,” there remains no FDA approved disease modifying treatment for Primary Progressive Multiple Sclerosis. For people like me with PPMS, today there is nothing more to combat our disease progression than there was 5 years ago, 50 years ago, or 1000 years ago. It’s not a great time to have PPMS.
But just because treatments are supposed to be FDA approved before we use them doesn’t mean that there are no treatments which could potentially help us. Sometimes you just have to be creative. With that in mind, I’ve tried a variety of treatments, some rather mainstream and others fairly radical. Nothing has helped.
Then I had my first spinal injection of a chemotherapy agent called methotrexate, back in March of 2012. I’ve received follow-up injections every eight weeks since. My sixth one is scheduled for later this month. Until now I’ve been uncertain about whether or not these treatments have had any positive effect. I described my frustration in a blog post I wrote just a few weeks ago - Head Games. So what has changed? Why am I now ready to declare that intrathecal methotrexate is working?
In the past few days I revisited two posts that I’d written shortly before beginning this treatment regimen. The first one was a January 3, 2012 retrospective about all my losses and gains in 2011. Until I re-read this post I had forgotten what a rough year 2011 was for me, medically. In that same post I extrapolated into the future and made some rather dire predictions about losses that I might expect in 2012 and 2013 if my disease progression were to continue at the same pace. I’ve incurred none of those losses.
The other post that helped clarify the issue for me was this one – My Perfect Day. I looked at the success percentages for certain tasks like getting into and out of bed, for example, and these tasks are no more difficult now than they were in the past.
I am also taking into account my wife’s observations. Kim feels that she is providing me with no more assistance in my daily tasks of living than she did a year ago. I must admit that I agree with her. If you sum all of these things up, then what do you have? You have this:
Intrathecal methotrexate is working to significantly slow down my disease progression, and this is having a positive impact on my quality of life.
As is my nature, being a skeptic and a man of science, I must consider the possibility that I’m wrong. Hence the “At least I think it is” hedge at the top of this post. There are a couple of ways that I could be mistaken. Maybe there was some natural plateauing action that was going to happen with my disease progression even if I hadn’t had this treatment. I’ll never know. Maybe it’s the placebo effect or some similar psychological deception. Perhaps I am continuing to progress, but part of me refuses to acknowledge it. Kim would have to be under a similar spell. Better people than us have succumbed to wishful thinking when faced with circumstances like ours.
I also need to keep this all in perspective, even if intrathecal methotrexate is indeed doing what I think it is doing. First, just because I am plateauing now, doesn’t mean that my progression will not resume at some point, maybe as soon as tomorrow. Second, this treatment is not without some risks. At any time I could start suffering from mild or even serious side effects, maybe as soon as tomorrow. There’s not an abundance of patient history regarding long-term use of intrathecal methotrexate. Third, just because I may have slowed down or even stopped this particular variety of protracted, miserable wasting-away, at some point I might develop any of a million or so other horrible conditions like heart disease, Alzheimer’s, or cancer, maybe as soon as tomorrow. This is even more likely for me than a healthy person, because of the damage MS has already inflicted upon my body.
So I’m making no promises or even predictions about tomorrow. But for today, my life is better than it otherwise would have been without this treatment. If nothing else, I averted ten months of disease progression, and there is a reasonable likelihood that this could continue, at least for a little while, into the future.
This makes Mitch a very happy boy.
Note: To see all of my intrathecal methotrexate posts, click here. They are listed in reverse chronological order.