MS Musings

As I sat in a tippy wooden dory deep in the Amazon rainforest—dripping wet with sweat, DEET, and the remnants of a sudden afternoon shower—I couldn’t help but wonder about the wisdom of my decision to spend an afternoon fishing. Specifically, fishing for piranha.

In theory, catching these little terrors of fresh water doesn’t take a lot of skill. It’s pretty basic: raw beef and a hook. To get their attention, you flail your pole around on the surface of the water and then let the bait sink, as if some living thing had just croaked. While piranha have the capacity to tag team a live cow and munch it to the bone in a matter of minutes much like a teenage boy who skipped lunch, they’ll only go there if they are trapped and really, really hungry. They prefer snacking on dead stuff that won’t fight back. So that’s where cubes of Brazilian steak come in handy. Lots and lots of cubes. See, I quickly discovered these little buggers are both sneaky and fast. Pretty much as soon as I’d feel a tug and yank up the line, I was left with a freshly de-meated hook and no fish.

About a dozen steaks later, I came to the realization that all I was doing was feeding the piranha like one would feed a pet dog. (“Does little piranha want a treat? … Ohhh, yes you do, yyyes you do.”) Plus, I was pretty certain that giving away all this meat was ensuring a vegetarian conclusion to our Amazon adventure. And then I got another nibble and wrenched up my pole. OH MY GOD I HAD HOOKED A REAL LIVE PIRANHA … IN GENUINE 3D! Here’s where things got interesting. Apparently there are a lot of nine-toed fishermen in the Amazon. I had never considered the possibility of what would happen if I actually caught a toe-eating fish. Getting it off the hook before it ate said hook—then the line, the pole, and then my arm—was now job number one. So I did what any brave angler would do: I threw the pole to our guide in sheer terror.

That afternoon I had wanted nothing more than to catch a piranha. Until I caught one. And perhaps that’s the teachable MS lesson in all of this. Be careful what you wish for—it might not be everything you want. I know many of us with multiple sclerosis have been clamoring for years for an oral drug instead of medications that require a stick. And now an oral disease-modifying medication is available with more in the pipeline. But new drugs come with their own list of side effects (some potentially serious) and a treatment history that is shorter than a Mike Tyson fight circa the late 1980s. If injections or infusions are working for you, perhaps the best course of action is the status quo. For now, at least. After all, you never know when you’ll end up with a piranha at the end of your line.

When I heard my MS specialist say that, it was like a swift kick in the stomach. And the dude giving me said kick was wearing metal-tipped baseball spikes. Oomph. That hurt. Over the past few years, I’ve given myself well over a thousand injections. And honestly it’s been super easy. Zero side effects, rare injection site reactions, and only the once-in-a-blue-moon painful jab that elicits a cursing. But a relapse in May, my second in just over a year, was a sobering experience, and not just because I had to lay off beer while I was taking 1,200 milligrams a day of prednisone. It called into question the effectiveness of those daily injections.

That’s always a concern with disease modifying drugs for multiple sclerosis. Even though you don’t see improvements—the role of these drugs is to slow down the MS, not reverse it—you have to trust they’re doing their job. Statistically they all work. Unfortunately, their efficacy is different in every patient. One drug might work far better than another.

So my neurologist tasked me with choosing a new treatment. I knew them all quite well, and we even considered clinical trials. My wife and I had to make some difficult decisions and more may be ahead (for another blog). We’re lucky to have such an array of choices to fight such a nasty disease. That certainly wasn’t the case just 15 years ago when there was a lottery just to have the opportunity to get Betaseron, at the time a new, untested drug that was the sole FDA-approved treatment for MS. So a week ago today I started a new treatment. One door closes, another opens.

I pride myself on being extremely careful with my medication. The Copaxone is kept on a “warm” shelf in the fridge. A digital thermometer stands sentry nearby. I check the temps nearly every single day when I poke my head in to grab, ahem, a beer. But all the safety checks in the world do zippo when the temperature sensor on the once-reliable ice box fails. Which is what happened, and temps dropped to at least 31 degrees. I grabbed out the box of shots and indeed there was no bubble in more than one syringe. Frozen. And with those shots where I could see and move the bubble, the immediate concern was had they frozen and then thawed? Perhaps, which hosed every last one. $2K into the trash. Ugh. If you freeze your drugs, two things happen: 1) the active ingredient is killed, so the injections help nada, and 2) the medication expands and contracts in the glass syringe, compromising the glass, which will shatter in a dramatic explosion if you use your auto-inject.  So if you’ve ever had your injection blow up on you (I’ve talked to people who have), it’s not the meds or the auto-inject or your technique. Your drugs have frozen. Keep them on the door of your refrigerator next to a thermometer … and cross your fingers.

So yes, I did have a first-shot experience that would rattle the cages of any veteran MSer. But, that said, it really isn’t so hard. Or, for that matter, painful. With the possible exception of Avonex (which is intramuscular), shots are a bang-bang process. They don’t hurt much–think a little pinch–and the medication only stings for a few minutes. I like to fiercely squeeze down on my earlobe (ouch!) right before I inject, just to throw off my brain. It actually works. Trust me when I tell you that giving yourself a shot only sucks for the first month or so. After that it is like brushing your teeth. I know you won’t believe me until you do it yourself, and then you’ll say, “Jeezo, that Dave guy from ActiveMSers was right.”

Okay, so the shot didn’t hurt. But, and this is a big but, there can (emphasize “can”) be complications of any drug. After two minutes, I start feeling a bit woozy. And then all heck breaks out. Eyes roll into the back of head, body sweats profusely, face turns a shade of cherry red, and my MS specialist is repeatedly telling me to sit on the floor. I make it partway–my butt was half off the chair–before I fully pass out, so she has to grab my rear end to keep me from rolling onto the floor like a sack of flour. Mind you, she’s perhaps a whisper over five feet and not much more than 100 lbs. In a matter of seconds I come to, disappointed my dreamlike state was being rudely interrupted, and my neurologist is staring down at me, also clearly disappointed. He had never seen a reaction to this particular drug and wanted to see it firsthand. And now it was over. Sorry bud.

If you have MS, there is a good chance you are on a CRAB, aka Copaxone, Rebif, Avonex, or Betaserson. And they are all injectables, i.e., shots. Shots with needles. Sharp needles that you stick into your body. So there I sat in the doc’s office, armed with the above knowledge (needle, sharp, stick), listening to one of my MS specialists explain to me in great detail the procedure to turn my body into a sadistic version of Pin the Tail on the Dave. My first shot missed my tail completely and hit me square in the thigh. It didn’t hurt. The medication stung a bit, and then went away. All done.*
*Well, except for the unintended excitement that ensued. For another MS Musing.