COVID-19 Vaccine And Flare-Ups

By Anna Samson

2 min read

As someone living with AxSpA, I've had several flare-ups in my life. Some last for a couple of days, others last for weeks or months. They also vary in intensity. Some are uncomfortable and some are absolutely debilitating. Of all the flare-ups I've ever had, I can unequivocally say that my worst flare-up ever was after getting my second dose of the COVID-19 vaccine.

Eligible for a booster

Part of my treatment for ankylosing spondylitis includes monthly infusions of an immunosuppressant drug. This puts me at a higher risk of contracting COVID-19 and also experiencing worse symptoms. This also makes me eligible to receive a third vaccine booster shot, since people with immunocompromised systems have a slower and less effective immune response to the vaccine.

But nervous

Having only just got out of my worst flare-up, I am very nervous to go get the booster shot. I spent most of the summer writhing in pain and debilitating fatigue. I saw posts online of other immunocompromised people who also had bad flare-ups following their second dose. While this comforted me because it made me feel less alone, it also made me sad that so many people were in more pain.

This flare up felt endless

This particular flare-up lasted for two months. While that may not sound like that long of a time, it felt endless. I get four months off of school in the summer and I spent half of my vacation time feeling worse than I've ever felt before. All of my usual pain relief treatments were ineffective against this flare-up. But I felt safer against COVID-19 and felt good about doing my part to keep others safe as well.

After my flare-up subsided, I felt relief. Like all I experienced was worth it. After two months of unimaginable pain, I began to feel like myself again. Soon after, my rheumatologist told me I can go get the third booster shot. While I want to do what I can to make sure I and others are safe, I am scared of having another horrible flare-up.

I will likely get the booster shot, but I feel so anxious to get it. I usually avoid doing things that trigger my symptoms. Or I pace the activities I do so that I don't over-exert myself. I do what I can to try to alleviate my symptoms and prevent flare-ups, but there's nothing I can do when it comes to the vaccine. While I am frustrated and anxious, I know that health officials would not recommend this if it was unsafe.

I hope I can tolerate this booster shot and wish well to anyone else getting theirs as well!

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Rebecca C Moderator & Contributor
<inline-mention username="toddmoore" user-id="4280375"/> - thanks for your description of events since getting vaccinated. I too had this "theory" when I began to have horrible side effects after each vaccine with Moderna. I felt as if the ingredients (protein?) had focused in on my most affected joints suffering from AS. I couldn't prove it but this was my thought process. It went to my lower back/pelvis, neck/head, and legs/feet, with full-body pain, malaise, and horrendous fatigue. Side effects last a good 10-14 days, gradually easing up. I get what you are saying, and it only validifies my train of thought in the matter. I have been leery about the booster, mine is due in Jan 2022. I am pondering the idea of possibly opening myself up to the COVID virus versus getting the booster and suffering through. I know how I react to the vaccine so I know I'll survive, uncomfortably albeit. I don't know if I will survive having COVID, I have other comorbidities to take into consideration so ... I may grin and bear the booster. My family wants me to get the booster - I really don't want COVID. These are just my thoughts. Wishing you health, wellness, and peace ~ Rebecca (community advocate)
toddmoore Member
Due to my own experience, I am (at least tentatively) very leery about getting the booster shot. I am a 63 year old white male, recently retired from work at a Pharma company. I have been fully vaccinated with the Moderna vaccine as of April 2021. My wife (who, as a healthcare professional, was vaccinated about 3 months before me) picked up Covid in late summer. Her Covid experience was not severe. (We theorize, maybe her Pfizer vaccine immunity weakened after 6-7 months, yet still also helped minimize the symptoms.) At that time, we socially distanced ourselves at home. Between that and likely my own immunity, I avoided contracting Covid. By way of background, my father, when he was alive, was diagnosed with AS and he used to ride his bicycle long distances to help with relief from lower back pain. When I was a younger man, I also used to have lower back issues with occasional muscle spasms and then bed rest. At that time, learned I also had the HLA-B27 gene. After some years, I learned to watch my diet to avoid lower intestinal issues (which I believe are intimately related to AS flare ups) and stretch every morning in the shower to avoid flare ups - which I still do to this day. Maybe that stuff worked, or maybe simply growing older just changed things. The point is, my AS flare ups have been a thing of the past - until recently (and "sort of&quot😉. I had my second Moderna dose in April 2021. Fourteen days after that dose, I experienced a small red rash on my lower coccyx area. Alarmingly, by the next day, it grew to a good size patch over 12" in size. It grew upward in the center of my lower back and also toward my right side. I went to a doctor, but there wasn't anything they could do except prescribe some steroid cream. Note: aside from a one-time reaction to an emergency room drug about forty years ago, I never get rashes. Although I stated the coincidental timing of the rash after the second vaccine dose, the doctor, along with a student intern, made no comment to my humble suspicion about possible vaccine implications. Therefore, I doubt very much if my rash was ever reported as a possible vaccine side effect. In any case, the rash quickly went away by itself. Then, in late Sept, seemingly out of no where (with no overt back related incident or precursor symptoms) I began to experience pain in my lower back area and toward my right side all day every day and even discomfort at night. It was especially aggravated (with excruciating pain) upon getting up / standing up first thing in the morning. While the pain remained in my back/side area, within a few days the pain also migrated down through my right thigh to my right knee (which I had bruised this past summer but which black& blue mark had healed by itself within a few days). The pain in my lower back isn't the same as the muscle spasms of my youth. And the pain though my right thigh isn't like the sciatica I formerly experienced back in the old days (when, BTW, it was always down my left side). As previously mentioned, the pain is especially excruciating when I wake up. Stretching (touching toes, crouching) only provides momentary relief while I rush to take a dose of Ibuprofen and a low dose aspirin - and then sit in a pseudo-reclined position on the couch until the pain goes away. After a short time, the excruciating pain gives way to bearable low grade pain and then none at all for a while. I just have been taking one Ibuprofen every 6 hours to get by and recently added a low dose 81 mg aspirin 2x per day (that I may try to reduce since I tend to experience bleeding you know where with aspirin). After these experiences, it gradually dawned on me that maybe my pain was an unintended consequence of my vaccination. I happened to listen to a YouTube video by a Dr. John Campbell ("Kyle's vaccine complication&quot😉. I am not a hypochondriac, but it did make further suspect that the spike protein from the vaccine had possibly migrated to problematic areas (like my lower back and recently injured knee). Thus, it may be that, my vaccine immunity, which I credit for avoiding Covid so far, has very possibly also been implicated in a bizarre, painful, and debilitating immune response. If my hypothesis is correct, then the pain I am experiencing daily has convinced me that I would rather risk Covid and avoid the booster. Since I am at mostly at home with no work related mandates and no danger to others, I tentatively plan to wait this "pseudo" flare up out - and it may take few more months of pain since I had the stronger Moderna vaccine. If I am correct, as the vaccine immunity grows weaker, then hopefully my symptoms will lessen/go away. I realize this leaves me open to Covid infection. However, since I was vaccinated, I hope any Covid infection will be on the non-severe side. Therefore, I will try to keep socially distanced and maintain my health to provide the best defense should I contract Covid. I have written this long comment ,in one sense, to journal my own experience, but also in case my experience may have some parallel with someone else's experience. Or maybe my situation may serve as a cautionary tale and thus "food for thought."
1. Anna Samson Moderator & Contributor
 <inline-mention username="toddmoore" user-id="4280375"/> Thank you for sharing! Everyone responds differently to the vaccine and I'm sorry your experience has been so distressing. I hope your symptoms get better soon and you find some relief.
James Hollens Moderator & Contributor
Hi <inline-mention username="Anna Samson" user-id="4164139"/> , Really sorry to hear that your last vaccine had such a horrible affect on you, I definitely understand you being a bit nervous about getting the booster. I just had my booster a few days ago and so far I seem to be doing okay (touches wood), but I was one of the lucky ones who didn't experience many side effects in my previous two either. Which kind of vaccine did you receive before? I have heard some people say that for their booster they received a different kind to the first two doses. I had Pfizer for all 3 of mine, but there were people at the clinic receiving Pfizer after having Astrazeneca before. Maybe if you were to get a different type for your booster your body may react a bit differently? Although I am far from a doctor so please check with a medical professional that this is safe and makes sense. I hope it all goes well for you either way! James (Community Member)
1. Anna Samson Moderator & Contributor
 <inline-mention username="James Hollens" user-id="2107776"/> Hi James, I'm glad to hear you haven't had any adverse reactions! And I think you're right about getting different shots. I got Pfizer for my first shot and tolerated that well, but I got Moderna for my second shot which caused the flare-up. I actually got my third booster shot two weeks ago and got Pfizer again and I haven't had any reactions.