Is the vaccine safe to get for people who have autoimmune diseases & fibromyalgia? If it's safe, will our pain get worse & our flares be worse than normal?
Before I answer the question, it is important to note that we have very little direct evidence specifically looking at COVID-19 vaccine safety and efficacy in people with rheumatic and musculoskeletal diseases or autoimmune diseases including fibromyalgia. So, the American College of Rheumatology convened a task force of experts to look at the scientific evidence that is available on COVID-19 vaccines as well as what is known on other vaccines in patients with rheumatologic and autoimmune diseases. These experts developed a guidance for COVID vaccine use in patients with these disorders and for COVID vaccine timing in people who are on immunomodulatory therapies. Of course, if you have any specific questions about your own circumstances, please have a discussion with your healthcare provider.
So the following information comes from this expert guidance.
First, to answer a question perhaps that was not asked here but is key to consider whenever someone is thinking about the risks and benefits of any treatment is how important is it that you get the treatment in question, in this case the COVID vaccine.
The COVID vaccination is definitely recommended for patients with rheumatologic and autoimmune disorders, particularly since these patients are considered to have a higher risk for hospitalization and worse outcomes from COVID itself compared to the general population. The experts acknowledge that there is variability among the different disorders and that there are differences in severity of rheumatologic and autoimmune disease progression that confer different levels of risk to individuals when it comes to COVID, but in general, the experts agreed that as a group, individuals with rheumatologic and autoimmune disorders are at increased risk of more severe COVID disease.
So, what do we know about the effectiveness of the vaccine response in patients with rheumatologic and autoimmune disorders? The experts agree that there may be a blunted response to the vaccine in patients who are on systemic immunomodulatory therapies and that the vaccine response may not last as long compared to the general population. The reason for this is because such therapies diminish the immune response, as they are supposed to do to help control the autoimmune disease, but as a consequence, could also diminish the immune response to the vaccine itself. To what extent, if at all, we do not know. Nevertheless, any protection, whether full or partial, from the vaccine is better than no protection at all.
Regarding safety of the vaccine, it is not expected to be any less safe than it is for the general population, keeping in mind that these vaccines are meant to elicit a reaction from our bodies—they are highly reactogenic vaccines—and so many people experience injection site pain, headache, muscle aches and pains, fever and chills. And these are good side effects—just signs that the vaccine is working, allowing the body to mount that immune response we want to protect us from COVID in the future. People who are younger and people after the second shot tend to experience more of these side effects. We are also seeing people who have had COVID infection in the past having a stronger side effect reaction after the first shot. But, remember that these side effects are expected, they occur within the first 1-2 days after the vaccine is given, and tend to last 1-2 days on average, so don’t be scared if you experience them.
Now, what about a possible flare occurring after receiving the vaccine? There is a theoretical risk that a flare or worsening of the disease could happen after getting vaccinated. We do not have good scientific evidence supporting this risk, other than it being a theoretical one. But, the benefit of getting vaccinated and being protected from getting COVID-19 outweighs the potential theoretical risk of a flare.
Last, in general, for the majority of the medications and immunomodulatory therapies you may be on for your rheumatologic and autoimmune disorders, no changes need to be made. Timing of the vaccination in relation to the therapies, however, may need to be coordinated, so please check with your healthcare provider on when you should receive your vaccine in relation to your treatments.
Dr. Marwan Haddad, Community Health Center