The Latest MS Advice for Covid-19 Vaccinations
Welcome to the newest edition of The Hunker Games. Dave and his wife Laura of ActiveMSers are hunkering down in isolation for the duration of the coronavirus pandemic—these are their stories (cue the L&O dong-dong) ... along with helpful advice, necessary levity, and, most crucially, hope.
Greetings, I was all set to tell you the harrowing and hilarious story of my first dental appointment in a year and a half (uhh, do NOT do what I did if you can possibly avoid it). All set to tell you about the hug I’d waited 28 years to give (it was totally worth it as you can see). All set to tell you about my memorable first restaurant experience since March 7, 2020 (of course there is a head-slapping Dave twist). I even put on my ordained minister hat and conducted a wedding in our backyard, reuniting my neighbor’s mother to her first husband, the one she had divorced over 50 years ago (uh, it’s a crazy story). But no. After my last newsletter I got a few furious responses and angry unsubscribes. If you recall, that’s the same newsletter where I informed readers that my father-in-law tragically had passed. While many of you sent along condolences (sincerely appreciated, thank you), others got stuck on my recommendation to “just get” the vaccine. “I will NEVER get the Covid Plandemic vaccines.” “I don't need political opinions here.” But my favorite: “I decided you are an self important jobbernowl.” I did not have the energy to correct the use of “an,” the lack of a hyphen in “self-important,” or the questionable use of “jobbernowl,” a dated insult that lacks the je ne sais quoi of today’s putdowns. 

Sigh. Listen, I warn all members in my introduction email that I’ll always give it to you straight. If you are in the ALL-CAPS NEVER EVER vaccine category, I fully realize that you probably think that I’m straight-up insane/ignorant/misinformed/gullible/whatever and hearing more from me is not about to change your mind. Cool. Just ignore this email and I’ll promise not to drone on and on about this topic in the future (or just unsubscribe, send me some diatribe about how wrong everyone is, pepper it with obscenities and typos, and send me a picture with a key stuck to your forehead). But if you are on the fence, uncertain yet still open to the possibility, even remotely, please read on. I am not going to pepper you with overwhelming scientific evidence, guilt you relentlessly, or use blatant scare tactics to encourage vaccination (e.g., Covid-19 can be present in the penis tissue long after men recover from the virus and can cause erectile dysfunction severe enough to require a penile prothesis). No, instead I’m going to generally discuss the Covid vaccine, how it relates to MS specifically, and why it matters. 

I’ll start by directing you to professional opinions on Covid and the vaccine on three respected MS websites: the US’s MS Society, the UK’s MS Society, and the research-based, neurologist-run MS-Blog. Between the three, you’ll get advice on most of your pressing Covid vaccine questions. But because attention spans these days are fleeting—squirrel!—I’ll attempt to summarize their findings and the consensus of their experts below. (Sorry, we’ll have to save frolicking through fields of MS humor and sloth trivia for a future date.) Please note that even after reading this, your personal neurologist and primary care physician are still your primary gatekeepers, so pay heed to their recommendations first and foremost.
// FACT: Why the Vaccine Matters
This is not a political opinion. This is not even an opinion. The consensus of medical experts worldwide: vaccines for Covid-19 work astonishingly well at preventing Covid-19 infections, hospitalizations, and death. Full stop, no debate. The RNA vaccines of Moderna and Pfizer are game changers, and the vector vaccine of the single-shot Johnson & Johnson is impressively effective. They are even effective against the Delta variant, an emerging threat that is far more transmissible and deadlier than previous variants. I’ve lost friends to Covid, been terrified for my hospitalized MS buds, and felt powerless as countless MSers continue to navigate the long-term aftereffects of getting the virus. Yes, the vaccine matters.
// REALITY: The Pressing Issues for MSers
The vaccines have been shown to be exceedingly safe for MSers, regardless of whether or not one is taking a DMT. But. Ooof, the buts. There may be a diminished antibody response for some MSers, particularly for those on anti-CD20-therapies (Ocrevus, Rituxan, Kesimpta) and S1P modulators (Gilenya, Mayzent, Zeposia, Ponvory). But even so, you are almost certainly getting some protection, and perhaps significant protection. We just don’t know enough yet. Studies are now starting to trickle in, and the guidance is continuously being updated and revised. Stay up-to-date by regularly visiting the aforementioned websites. As for vaccine side effects, you might have zero, it might set you back for a day or two, or for some it could pack a bigger wallop. A fever is not uncommon, and your MS symptoms may be magnified temporarily, but that is IMMENSELY preferable to actual Covid. Unfortunately, your response to getting the vaccine (flattened for a spell or nary a sore arm) is NOT a reliable indicator of whether or not it took, sorry.
// ADVICE: What You Probably Should NOT Do Right Now
Get an antibody test. In general, this currently is not recommended, as most diagnostic Covid-19 antibody tests don’t detect antibodies to the spike protein used in the current vaccines (plus they don’t measure other key parts of your immune system, like T-cells). This post by Rachel Horne describes it well. Also, don’t play doctor. Don’t delay your treatment or make a decision to discontinue your MS DMT without discussing that with your neurologist, as that could open you up to a host of problems, including serious disease rebound. And don’t just go out and get a vaccine booster willy nilly (we are all waiting on recommendations to see if that is helpful or even needed). Oh, lastly, thinking of skipping shot #2? Don’t. If the vaccine requires two doses, you really do need two. For example, Pfizer’s two-dose vaccine works surprisingly well (nearly 90% effective!) against the new Delta variant but is barely a tick over 30% effective if the recipient skips shot #2.
// RECOMMENDATION: What You CAN Do Right Now
For many of us, 2 weeks post vaccination means we can go back to “normal” MS life—you know, that MS normal of being generally paranoid about catching other communicable diseases and viruses, yay! But for those of us vaccinated MSers who are on DMTs that might dampen our response to the Covid vaccine, until we know more, the general recommendation is to keep doing what you’ve been doing for the past year and a half, at least around those unvaccinated: socially distancing, masking, avoiding indoor crowds, etc. But there is one more thing you can do. To help unravel the uncertainties of this beyond sticky situation, iConquerMS is gathering important information related to the Covid-19 vaccines and how they work in people affected by MS. Please read this for more information about the study, and then LOG IN or JOIN iConquerMS to participate in COVER-MS, the COVID-19 VaccinE Response in MS. They need gobs of committed MS misfits like yourself to volunteer in this virtual study.
So that’s where we are at this moment in time. I know, I know, I’m tired of this crap sandwich, too. When fortune cookies start to repeat—and make you rethink career choices (I thought I already had a creative outlet in ActiveMSers?!)—you know you've gotten a wee too much carryout. But if we’ve made it this far, let’s not let our guard down just yet. Hang in there. Your patience will be rewarded handsomely, and bonus, you’ll get to read some fun Dave stories in the meantime about going to the dentist and more about getting hugs. Hugs! Remember those?! They feel pretty damn good. So please accept a virtual one from me. And as always, be active, stay fit, and keep exploring (safely)!

Dave Bexfield

p.s. If you live in the western US, you have been experiencing the effects of a “heat dome,” which in layman’s terms means “hot enough to cause you to spontaneously combust into a dramatic ball of flame that will later become a meme on TikTok, but hey, at least your estate can sell the NFT and make serious bank.” To avoid combustion, ActiveMSers has advice galore on how to avoid overheating with MS along with some killer discounts on cooling vests.
be active - stay fit - keep exploring