‘I Had Relief’: A Rheumatoid Arthritis Patient’s Experience Getting Their Third COVID-19 Vaccine Dose

Cheryl Crow, OT, is an occupational therapist from Kirkland, WA, who specializes in treating rheumatic diseases. She also lives with rheumatoid arthritis and has taken different medications to help with her pain management since being diagnosed at 21, including methotrexate. She runs a health education company called “Arthritis Life” and is a member of the American College of Rheumatology. Crow received her third Pfizer COVID-19 vaccine dose on August 17, four days after the Centers of Disease Control and Prevention recommended that certain patients with rheumatic diseases get a booster shot. We spoke with Crow about her disease, why she made the decision to get a third vaccine dose, and what her experience was like.

Tell us a bit about your journey with rheumatoid arthritis. When were you diagnosed? How has it impacted you?

I was diagnosed when I was 21, right before my senior year of college. It was very surprising and very difficult, because I had been very healthy my whole life. I was the captain of my college soccer team, I was very active, I ate healthy, I did all the things you were “supposed to do.” I learned that autoimmune diseases could strike anyone at any age. I started having a lot of fatigue and pain. It was very difficult to get the diagnosis. When I finally got referred to the rheumatologist, they saved the day and gave the diagnosis. It’s (rheumatoid arthritis) affected everything in my life. My career choice, conversations with my husband before we got married when discussing having kids, my social life. However, I’ve still been able to do most of the things I want to do in my life. As an occupational therapist, our little tag line is, “helping people live life to the fullest and adapt to their conditions.” That’s been my goal.

When you first heard about COVID-19, what were your initial thoughts about how it would affect your health?

Like everyone else I was a little bit scared. I wanted to err on the side of caution. Even before I got an autoimmune disease, I was always cautious about my health. I live in Kirkland, WA, which is where the first U.S. case happened. I was teaching occupational therapy at the school where students were learning from the skilled nursing facility where the first case was detected. It was very quick. We (Crow and her husband) were like “okay we’re going into lockdown on our own.” My son’s school didn’t even stop for two more weeks. We took him out immediately. I felt grateful that I was able to work from home and my husband was too. I know for a lot of people that was really challenging.

How did you feel when you found out there was a vaccine for the virus?

We were so relieved, so happy. I wanted to get it (the vaccine) as soon as possible. I was a little frustrated at first that people with autoimmune diseases, like rheumatoid arthritis, were not prioritized. Myself being immunocompromised, I felt like I should get the vaccine earlier. We didn’t have all the data yet. The CDC made the best decision with the data they had. Now that they (the CDC) have more data they made a different decision with the booster so I’m happy about that.

When you got your first shot, what was that experience like for you?

In Washington state, I just got it as soon as I could. I’m 39, I wasn’t prioritized, our state just did it by age. I got it (the vaccine) in the spring, and I felt really relieved. I had some side effects, like most people. I felt fatigue, had a headache, and arm ache. Those were the symptoms that I had, they went away, and they didn’t bother me too much because I knew where they were from.

How did you feel when you saw the news release from the ACR sharing the CDC’s recommendation that certain patients with rheumatic diseases could receive a third COVID vaccine dose?

I felt amazing! I felt really excited! I was just like get me there now. What’s funny is I found out right after I had taken my methotrexate. The recommendation is talking to your doctor, I had talked to my doctor, skipping the week before, or a week after. So that was the first thing was like, “oh shoot I just took the methotrexate.” I talked to my doctor, figured out what a good time would be, and then I got it (the vaccine) as soon as I could.

How did you feel when you got your third dose? Any side effects afterwards?

I had relief after I got the vaccine. For me, the unknown health issues are always the hardest. If I know exactly why I’m having something I just deal with it. I had fatigue. It wasn’t easy or fun, but I just knew this is the fatigue from the vaccine and it’s going to go away in a few days. I had a really sore arm and I had a headache off and on. Definitely brain fog this time more. Like not just physical fatigue, but I just felt like there was a cloud in my brain, between my thoughts. Now almost 72 hours after the vaccine, I’m starting to be a little bit more coherent again.

As an OT, are you recommending your immunocompromised patients get a third dose? Why or why not?

It’s definitely outside my scope of practice to recommend vaccines or medications. I would always recommend that patients talk directly to their doctor and get guidance based on their specific circumstances. There are the general guidelines from the American College of Rheumatology, ACR, that came out on August 18 that are super, super helpful. They say in general if you’re on X medicine, what should you do? If your disease is in this state, what should you do? There is wiggle room within that. For example, if someone’s on methotrexate and they’ve been well controlled and they’re in medicated remission for five years, the recommendation from the rheumatologist might be different than somebody who’s on methotrexate, but also on two other medicines and has also had a big flare up recently. The risk/reward ratio for people who are considering withholding the medication and are following the guidelines, they might decide, “You know what? We don’t think you should hold your meds, because we don’t want you to be in worse flare up.” It’s really good to get that individualized advice. There’s a reason we have experts, the CDC and the ACR that recommend these things. The charts and the recommendations have been helpful for me personally as a patient. I always refer people to check out the guidelines, check out the reasoning behind them, and then talk to your doctor.

 

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Editor’s Note: The American College of Rheumatology has issued an updated version of its “COVID-19 Vaccine Clinical Guidance for Patients with Rheumatic and Musculoskeletal Diseases” that includes recommendations on how to time third vaccine doses and immunosuppressant medications. Based on evidence published to date, its task force continues to feel the benefits of the COVID-19 vaccine outweigh the potential for vaccine harm for most rheumatology patients. View more vaccine information.