Because of COVID-19, many of us who take disease-modifying therapies for MS are stuck in a tricky situation. How cautious do we need to be? How high IS the risk? If we are due for another infusion or dose of medication, should we take it or wait a few weeks? How isolated do we need to be?
I just had my infusion (with ocrelizumab) two weeks ago, which suppressed my immune system in order to control my MS. These questions of risk are personal and real.
The sad reality is we don't have all the answers. But most MS specialists seem to concur that many MS medications like ocrelizumab – along with alemtuzumab, cladribine, rituximab, fingolimod, dimethyl fumarate, diroximel fumarate, teriflunomide and siponimod – probably increase the risk of viral acquisition and severe illness, if infected. Taking extra precautions seems prudent, especially for those who are also over 60 and/or have heart or lung conditions. Talk with your doctor regarding modifying your treatments, and discuss other strategies to lower your risk.
As an MS Warrior, I am used to uncertainty. I don't know when another MS flare will sneak up on me, rob me of some vital function, make just a brief visit or stick around for a prolonged stay.
I'm also used to weighing pros and cons, risks and benefits. As a family physician, I have guided many patients over the years in testing and treatment decisions, and often the course is not clear-cut. In the decade since my own diagnosis with MS, I have worked with my neurologist to choose medications and develop treatment plans. We usually agree, but not always.
Add COVID-19 to the mix, and I'm pushed in new, frustrating directions with my decision-making, particularly with social distancing.
Just today, here are some of the decisions I have had to make:
- Can my daughter have a friend over to spend the night?
- Should I give my husband a hug when he comes home from his shift at the hospital?
- Since our other spring break travel plan was cancelled, can we safely go on a road trip later this week and stay at an Airbnb or with relatives?
- Can I go biking with my parents, who are in their 70s?
- Can I go on a walk with two friends – both physicians who could have come in contact with infectious patients?
In my city of Austin, there are just a handful of known cases of COVID-19. But we expect the virus is much more prevalent, and we can't confirm it because we haven't been testing many people.
COVID-19 can be passed to others – usually through respiratory droplets – even by those without symptoms. Without widespread testing, we can't tell who is infected, so we have to assume almost anyone potentially could transmit the virus.
Hence the recommendation for "social distancing" – keeping more than six feet away from others (especially if they are coughing or sneezing) and avoiding large gatherings, crowded venues, public transportation and nonessential travel. Social distancing also means limiting our contacts to just a few people and hunkering down at home.
For those of us with MS, social distancing is essential to lower our risk, though it can be difficult and downright lonely. I am trying to focus on "safe" activities that allow me to interact with others and get some air, such a taking bike rides or walks outside and connecting via text or on the phone with loved ones. Some of my neighbors are banding together to help those at high risk by grocery shopping or picking up prescriptions. We are all scared, but we will get through this difficult and uncertain time.
Uncertainty can be infuriating, even paralyzing, but as I have with MS, I will try to let it be a teacher and guide. I may not know what this week will hold, but I can be present in this moment. I can't control this virus, but I can try to meet each bit of news, each decision, with patience and grace.
- Wash your hands
- Don't touch your face
- Cover your cough
- Avoid large gatherings
- Don't go out if you're sick
I will follow the guidelines. I'll keep up with the news. I'll make sure to get enough sleep, exercise, and double down on self-care. And I will also look for silver linings, practice gratitude, and take each day as it comes.