Like a lot of people with MS, I took part in the “Great Ocrevus Rush of 2017,” with the fanfare surrounding the release of the first therapy in the United States known to have some ability to stem the advancement of primary and secondary progressive MS.
I wrote about it, did the first two infusions, and received the same hopeful inquiries and support from my friends and family. And I’m scheduled for my third infusion in just a few days, on Jan. 8.
I also recently completed my first 12 months taking biotin.
Ocrevus (ocrelizumab) and biotin play important roles in my approach to dealing with MS; the former hopefully serving as a firewall against progression, and the latter ideally playing a role in re-myelination and possibly even restoration of function and capacity in some of my central nervous system.
For as long as I can remember, I’ve thought of the end of the year as turning a corner from one year to the next, thinking — perhaps hoping — that somehow whatever narrative I stitched together and hung on the prior year might positively inform the new one.
Yet the year’s end made me think about what — if anything — either drug is doing for me.
The disease’s very unpredictability seems to me to make much of an assessment difficult at best. My symptoms continue to gradually worsen. I’ve never had a lot of identifiable flare-ups, so there haven’t been many to reduce or eliminate. To be honest, so far, I’m not sure either has done much for me.
Or have they?
There’s an argument to be made that my symptoms might be even worse without one or both of the drugs. The only way to find out for sure is to stop taking them. Given the disease’s unpredictability in progression, even that assessment seems dicey. It’s a confusing dilemma, one that lots of people with MS encounter.
Curious about what others are experiencing with the drugs, I stumbled upon “Scientists are seeking new strategies to fight multiple sclerosis,” a November article in ScienceNews that’s helping me build a little bit of a framework that makes sense — at least to me, and at least for now.
For starters, there’s this:
“Multiple sclerosis is arguably the most complex disease ever described,” says Sergio Baranzini, a geneticist at the University of California, San Francisco, in the piece.
While I didn’t necessarily want to read that, the affirmation that everyone else finds dealing with this disease confusing seems somehow reassuring.
Part of it, Baranzini says, is that MS involves our autoimmune and central nervous systems, two of the body’s most complex systems. And part of it, according to Ashley Yeager, the article’s author, is that we still don’t know what MS is.
“Scientists aren’t even clear whether multiple sclerosis is a single disease or a multitude of maladies,” she writes.
Ocrevus, Yeager notes, isn’t a cure. “In fact, none of the 15 FDA-approved drugs for MS, which all modify or suppress the immune system, actually stop the disease. The drugs only reduce the number and severity of flare-ups and, in some cases, slow the visible marks of brain damage.”
Ocrevus “offers no relief for 30 to 40 percent of patients with primary progressive MS,” she adds.
I’m still hopeful about the drug and its efficacy, as is my neurologist, along with plenty of others. Yet my flare-up-free history feels like it’s flying in the face of the drug’s sweet spot, and I’m keeping my hope in check.
The same goes for biotin. I haven’t noticed any type of improvement and can’t say if it’s effective or not. On the other hand, who knows?
What Yeager’s article helped me better understand going into 2018 is that MS is an inextricable part of my life’s narrative and will probably always be. The sooner I’m OK with that, the better.
It’s possible, of course, that neither of the drugs will help me with the disease. It’s also possible that perhaps scientists and researchers will learn from why and how the drugs failed me and others and how they could be improved, and in doing so, take one step closer to figuring out “the most complex disease ever described.”
My experience with MS — good or bad — might somehow inform that.
That’s a narrative I can live with.
Happy New Year’s and best wishes for 2018!
This article first appeared in Multiple Sclerosis News Today.