Hayfever Medicine for MS – Really?

There is, and has only ever been, one FDA approved treatment for primary progressive multiple sclerosis. It’s called Ocrevus, and I’m taking it. Every other drug/treatment I have employed in the last 16 years was off-label, rogue, underground, unapproved, unauthorized, unofficial, shady, under the table, or any combination of these. I’m about to do it again.

A few days ago, I stumbled across this article about an over-the-counter antihistamine called Clemastine Fumarate. It met with some success in a Phase II, randomized, controlled, double-blinded trial for people with MS. Supposedly, it encourages the body to repair damage done to the nerve coatings known as myelin.

Could it be that simple? Could I treat my MS with hayfever medicine? Almost certainly not, but the risk is so low and the potential rewards so high, I’m going to give it a try. First, I had to figure out where to buy the stuff.

At the dosage they used in the trial, I would have spent thousands of dollars per year, even at discount pharmacies, to get enough of this drug over-the-counter. So, I contacted my neurologist and asked if he could write me a prescription. He did, and I picked it up yesterday, and it has a $10 per month co-pay. That’s a little better.

The likeliest side effect is fatigue, and I can confirm as much after only a day on these tablets. Like many cold medicines, it makes me sleepy. The good news — that side effect should decrease over time.

If I sat back and simply followed the rules, I would have a long wait on this drug. I expect the drug company will run a Phase III trial, and if it is successful, they will petition the FDA for approval. Those two processes—trial and approval—could easily eat up five years. I can’t wait five years. I’ve been down this road many times with treatments that hadn’t made it all the way through FDA approval, and I haven’t had much luck. But I’m desperate, so here I go again…

Book Update

You’ve been so very patient. I announced here, a long time ago, that I was writing a book and it was almost done. Obviously, I lied.
Given that this is a memoir, and given that I’ll only have one chance to tell this story, I’ve been rewriting and editing and tweaking. Finally, I am only a couple weeks away from being finished, at which time I will start looking for an agent or a publisher. That process will take months, but if I get no bites I will self-publish next year. I promise!

As a reward for your patience, please enjoy this excerpt from the chapter entitled "Smells Like Money." 

***

    I was the youngest, born in October of 1963, five weeks to the day before the assassination of President Kennedy. For the remainder of my childhood years, Dad teased the men in town who weren’t lucky enough to have produced a son, let alone three, by offering his assistance, guaranteed boy, first try. When Mom heard him say this, she only rolled her eyes. On this subject, Dad was all talk.

Our little town was situated deep in the woods of Maine, the most densely forested state in the country. Tourists flocked to our picturesque coastline. Other than sportsmen, however, most visitors didn’t travel inland, and we preferred it that way.

People from away offended our sensibilities in countless ways, and we didn’t need their money. Our town did quite well, thank you, because we knew how to convert trees into paper, effectively spinning straw into gold.

Men like my maternal grandfather, Carl, cut and limbed trees at nearby forest operations. Pulp trucks loaded the timber and headed for the paper mill in the center of town. Every day this convoy paraded by our homes and businesses—a constant reminder of what drove the economy in our town, what put food on our tables, and where hundreds of our residents spent so much of their lives.

When the logs disappeared into the mill, men like my father and my paternal grandfather took over. They chipped, steamed, digested, washed, and bleached the fiber to a pulp. This pulp was then refined, colored, filtered, dried, cut, and wound into giant paper and tissue rolls, before being packaged and labeled. The finished products emerged from the other end of the mill where they were loaded into a separate fleet of trucks heading south. Always south. To the north there were nothing but more trees, potato fields, and the Canadian border.

Only the company’s top minds and most senior employees understood these complex processes. To everyone else, both workers and townspeople, it may as well have been magic. But the magic came at a price. The towering smokestacks emitted water vapor, soot, and airborne toxins in clouds of white, brown, or sometimes black. On clear days, this discharge blasted high and true, like a steam locomotive. On humid or drizzly days, however, it oozed out the top of the stacks, never rising far enough to be swept away by the prevailing winds. This viscous haze enveloped the town and permeated our homes.

Workers who picked up cigarettes and beer at Sampson’s grocery store or grabbed a bite at the Rose Bowl Restaurant wore the stench as a badge of honor rather than a source of shame. It meant each of them had a secure, high-paying job, presumably for life, unlike the store clerks and restaurant staff who waited on them.

At least a dozen towns in Maine smelled as bad or worse than we did. Rumford and Millinocket reeked, and Westbrook polluted Maine’s largest city, Portland. But no other mill town had a name with such an unfortunate rhyme. “Stinkin’ Lincoln!”

My father didn't put up with the insult. When people from away disparaged his town and his employer, he growled, “Smells like money,” and that would be the last word on the matter.  

Preserving My Identity

I've been asked how it is that I maintain my identity – how it is I keep MS from defining who I am.

To a large extent, I don't.

Earlier in my disease progression, MS was a minor player in my life. It was an afterthought, an asterisk, a postscript. It rendered my identity a bit more interesting than it otherwise would've been, but that was all.

As the disease began to have a profound effect on my daily activities such as walking and using my hands, it became more and more difficult to keep MS from shaping my personal identity. So I didn't fight it. I embraced it.

I am a husband with MS, a friend with MS, a brother and a father with MS. I am a blogger with MS. Note that MS doesn't supplant my identity; it enriches it. Don't get me wrong. I'm not saying that having MS is a good thing. It absolutely sucks. But embracing the fact that I have MS doesn't.

Granted, for some people with MS it may be important to keep the disease out of your public identity, often for reasons having to do with career preservation. I get that. The only advice I have for you, if you need any, is this. When MS needs a chunk of your time – whether for doctors’ appointments or naps – give it what it demands, then return to your other interests without apology or guilt. I did that for quite a few years, and I was largely successful.

I'm not only a guy with MS. For brief periods of time I’m able to put the disease out of my mind. The best distractions are quality television and movies, books, conversations, writing, or any task requiring concentration (even though my ability to concentrate is diminished). 

How do I identify myself in my dreams? It's a mishmash of walking Mitch and wheelchair Mitch, often switching back and forth indiscriminately.

I'd like to think that people I'm interacting with, at least for brief periods of time, can also forget about the disease. But to imagine that it's ever far removed from who I am would be an act of denial.

Please consider the notion that accepting these changes to your identity does not represent failure or defeat. It may simply be the best way to deal with a new reality.

I'm now that guy with MS, and being identified as such is not a bad thing. It's just a thing.