|Recovering from HSCT in 2010, the last time I treated my MS.|
Grumble, grumble, grumble. No, that’s not my tummy pre-breakfast urging me to consume multiple doughnuts (mmm, doughnuts). It’s just me, grumbling about my MS, which has gotten feisty again. After more than five years of being medication free following my stem cell transplant for my particularly aggressive form of multiple sclerosis, I recently was tasked with choosing my next form of treatment. And boy has the treatment landscape changed since 2010 when I got my HSCT.
Back in 1993, the decision of what MS drug to take was moot—Betaseron was our only option. But now it’s like picking out a salad dressing at the grocery store. So many choices! Do I go with the garlic peppercorn ranch with an outside risk of PML or do I try the balsamic vinaigrette that may hose my thyroid? Or do I skip the dressing entirely? Deciding what to do can be so taxing. Here’s how I broke it down, and how I came to a (sorta) satisfying answer.
Right now my disease feels like it is in the slow burn stages. Nowhere near the inferno of the fall of 2009, thankfully, but it’s been swiping my mobility like those people who nosh on grapes in the grocery store. Popping one or two grapes isn’t noticeable, but after a while, a bunch is suddenly gone. Am I rolling into secondary progressive? That’s a very real possibility and another piece I had to factor into my decision.
For starters, I eliminated treatments I had failed: Copaxone, interferons and Tysabri (and I am JC positive to boot). That part was easy. So was saying no to Novantrone—far too many risks with far too little benefit; doctors are rarely prescribing it these days anyway. Then because of the fuzziness of my MS (no relapses in over five years) I nixed treatments that were generally ineffective in secondary progressive trials, so Gilenya, a powerful RRMS oral drug, was out as was Tecfidera, which also showed inconsistent performance in progressive MS.
What about Lemtrada? It’s a big gun, and a treatment I tried to get on in 2009 as part of a clinical trial, but there would be a few issues with taking it now. It works best in the relapse-remitting phase of the disease, the first infusion in New Mexico just took place last week so the waiting time would be lengthy, and my stem cell transplant took a not so dissimilar path as both are immune system reboots. Also Lemtrada does come with a host of side effects, something I might be more willing to overlook if my MS was raging, but it’s not.
Off label options? Rituxan seemed like a logical, no-brainer path, especially after the recent announcement of ocrelizumab’s success in treating the primary progressive form of our disease. Ah, but lack of FDA approval, likely to happen in 2016, means insurance will not cover the medication—despite me asking nicely. I won one big fight in this department, but two? Wasn’t going to happen, especially since I would not be taking the drug as part of a clinical trial. And finally, another stem cell transplant, the biggest gun (and one I have zero regrets using) seemed like too drastic of a step for a treatment that lasted me fewer than five years and one that would cost me personally six figures. So by process of elimination, that leaves me with one lone salad dressing on the shelf: Aubagio.
No, Aubagio might not have the same oomph in preventing relapses as the other orals, but it does have a wild card: it targets both T and B cells. And B cells, as has been shown in ocrelizumab/Rituxan trials, just may be a key part in treating secondary progressive MS. Plus, its side-effect profile is relatively mellow compared to most other DMDs, although you have to have your liver checked regularly.
So there you have it. Choosing a salad dressing isn’t easy, but if you stand there and stare at the shelf long enough, one usually stands out. Or you throw your hands up in frustration and just go home and make your own: whisk up three parts oil, one part vinegar, a touch of Dijon mustard, salt and pepper to taste, bam!