Oh, hey there! It’s been a while… I know, my bad! I’ve been meaning to sit down and get some of these thoughts on my brain typed out, but the world has essentially been flipped upside down at the moment thanks to… wait, let’s give this virus throwing us all for a loop a name, shall we? I feel if we have to deal with it we might as well personalize it a bit, right? What about Coco? Short for Corona/Covid? K, that works!
So, Coco has been a super unpleasant guest in our lives for the last 14 months - a terrible houseguest who has now claimed squatters’ rights! You’d think having a very demanding visitor would bring us to a halt - and it did, at the beginning of all this - but in a way, we are now finding ourselves even busier because people have to juggle their day between work and online school, wear more hats than ever and find new ways to stay out of Coco’s way! This guest is exhausting!
It’s been over a year of getting to know our unwelcomed tenant and I know I’m not alone when I say, it’s time to go Coco! Thankfully, while we have been home watching Coco make the news, creating new ways to connect with friends and family and completing more puzzles in the last year than in our entire lifetime, there have been good people developing multiple vaccines to help tackle this Pan-Demi-Lovato! So where does someone with Multiple Sclerosis fit into the whole “wait your turn” vaccine roll out? Well it’s been a little more complicated depending on a few factors. I understand this can vary widely based on your location, your situation, your treatment, your neurologist’s advice and so on… so keeping that in mind, I can only speak on my situation and what I have experienced.
Nothing about dealing with MS has been quick. It took months to book an MRI, just as long to receive orders and go for many rounds of blood work. Waiting for a specialized Evoked Potential Test to measure how my brain responds to a vision stimulus took 7 months. Getting diagnosed took over a year. Then waiting to start Ocrevus treatment was another countdown. And all of this I totally understand - we need to be sure, rule other things out, cross our T’s and dot our I’s! I’m fine with it - I’ve learned to have patience, I know it’s all for good. Once I had my first round of Ocrevus (the initial dose - administered in two separate IV infusions two weeks apart… because again, waiting lol), I was excited we finally got the wheels turning! We were moving, doing something, going forward! We’re helping reduce chances of a relapse - something I desperately do not want to experience again! YAY!
But hold up... there's gotta be a "gotcha" moment, right?! Right... so what about Coco? Because rumour has it, Coco is not one to share the spotlight with Ocrevus… so if you’ve started Ocrevus treatment then you bet Coco is going to be super dramatic about it and cause you to experience a more severe form of her rage. No thank you - Coco is already scary enough without her extreme side taking aim. I had seen a few threads on Facebook groups with Ocrevus patients posting that their neuro said they can get the vaccine as soon as 2 weeks post-treatment and others waiting up to 5 months after treatment. I had an appointment (phone appointment… thanks Coco) with my neurologist at the end of April so I saved my questions until then. During our appointment we talked about my symptoms, complimentary therapy, how treatment is working, what to expect in the coming months (more bloodwork and MRIs) and then “Ok, so let’s talk about the vaccine.”. As if we even had to clarify what vaccine he was talking about! He was on point with what I had already researched, suggesting I wait at least 4 months after my last Ocrevus infusion before receiving my Coco NoMo’ shot. The reasoning behind this suggestion is based on B cell depleting therapies, like Ocrevus, reducing the immunization effect of a vaccine, although the amount of this diminished effect varies by vaccine and its timing. And once you received the vaccine, you should wait up to 4 weeks before your next infusion.
Now, here comes the curve ball. If I was to wait 4-5 months after my last infusion, then receive dose 1 of the vaccine, most patients will still have to wait up to 16 weeks before receiving their second dose of the vaccine. Which reallllllly messes up the Ocrevus treatment timeline. I was fortunate enough to find a clinic to accommodate my MS treatment schedule, however the clinic only had two appointments available and it was a “take it or leave it” situation. Option A: Taking it would mean I would have both vaccine doses well before my next Ocrevus treatment, however it would mean dose 1 of the vaccine is administered only 3 months after my treatment. Option B: Delaying vaccination to 4 months would increase the possible effectiveness of the vaccine, however I would have to wait up to 16 weeks for dose 2 which delays my Ocrevus treatment and increases my chance of a relapse. So essentially, I’m damned if I do, damned if I don’t. As one research article stated “The potential for severe COVID-19 infection is higher in patients with multiple sclerosis who are older, have cardiovascular or pulmonary comorbidities, and have significant baseline disability, and B cell depleting therapies may increase the risk as well.”. So, which do I risk? Potential decreased effectiveness against Coco? Or increased chance of a relapse? My neurologist and I tossed the issue around for quite some time, and we weighed all the options. Eventually I just flat out asked him what he thought I should do, to which he replied “if you have the option of getting some vaccination protection, and it does not interfere with your next treatment, I would do that.”. It’s settled! And if you saw on my Instagram page, that’s exactly what I did! While I still have to be very careful about limiting my exposures to potential acquisitions, I feel better I made a decision to protect myself even if the effectiveness is reduced. Coco is like a wild teenager experimenting through different phases of her life - we never know what will come next! I’m happy I’m at least armed with some protection and it won’t mess up my Ocrevus scheduling!
If there's one thing I've learned from my experience with MS, it's that sometimes (a lot of the time), things can take more time than we hope for. So, while Coco is still around being a hot mess of a visitor, I feel better I have taken that one step towards evicting her for good! Until then, keep calm and puzzle on (or zoom, or bake, or Netflix on… you get the picture). Stay safe!
*Special thanks to Eric J. Seachrist (2021) Multiple sclerosis, B cell therapy, and the COVID-19 vaccine. Elsevier eNeurologicalSci.