Hello I had all my covid vaccines and the rheumatologist said the covid booster in some people can trigger it. So now I have AS from the covid vaccine? Is that right ? I am 63.
I never had any symptoms before.
It came on suddenly two months after the first shot.
Thank you
Jan
As the coronavirus disease 2019 (COVID-19) pandemic continues worldwide, vaccination has been considered an effective measure to protect people from the COVID-19 and end the pandemic. However, for patients with rheumatic diseases (RD), concern for the induction of RD flare may combat the enthusiasm for vaccination. In general, current evidence doesn’t support the increased risk of disease flare after COVID-19 vaccination. However, the disease flare of RDs may be triggered by COVID-19 vaccinations, especially for patients with high disease activity. Most of these flares after vaccination are mild and need no treatment escalation. Considering the benefits and risks, RD patients are recommended to receive the COVID-19 vaccination but should be vaccinated when the RDs are in stable states.……ncbi.nam.nih.gov
Sorry I can't help you but I suspect that no-one can answer this question. As with all autoimmune problems they are triggered by something but it could be anything. All the best
You are right…. Nobody knows….Covid vaccinations have proved effective re the virus….however various side effects both major & minor are many…but doctors are very wary of confirming symptoms manifested post vaccinations were caused by them!
My rheumy just shrugs his shoulders.
It seems likely that autoimmune diseases are triggered by an increase in immune activity by the body. It could have been the vaccination but think how much more activity there would have been if you had had severe Covid.
It's possible, there's definitely a link between the vaccine and increased numbers of people diagnosed with a RD, however, you were already at an increased risk of developing another type of RD given you have RA already. Or it could be a coincidence.
Ankylosing spondylitis develops very slowly, it’s why it currently takes 8.5yr from symptoms appearing to getting a diagnosis. I suspect if you have evidence of AS on X-rays, that you’ve had it for years. It’s more likely it triggered a painful gkk look are. Out of my 7 covid vaccines, 3 have triggered flares that lasted several weeks.
Most people diagnosed with AS are under 45, those that are diagnosed later, tend to have had it for years, but been undiagnosed. I was diagnosed at 51, however at29 I was told something on X-ray suggested I’d have serious back issues in the future. My Sacroiliac joints and ribs were fused at diagnosis, and the rheumatologist said, this was probably what they seen 23yrs previously.
So many things can trigger autoimmune illnesses, including illness itself. So it’s posdibjj ok e if you got covid, you may still have got AS. I wouldn’t dwell on why, it won’t change things. Best to look forward at how best to manage this, and having a good quality of life. I take a biologic for my spinal symptoms, and MTX for the peripheral symptoms, which combined give me a reasonable quality of life. Take care
going off on a slight tangent: I have also always had some issues with my lower back, coccyx and sacroiliac joints even as a small child. Of course as a kid I moaned about it and then tried to ignore it but was often told off for not sitting straight because of my coccyx pain.
I remember one or two doctor's appointments where my back and ankles were discussed but my mother was not one for following things up and so I just carried on. Later on in my early teens my ankles got so bad that I did speak up and I remember having a totally pointless appointment with my Dad's army doctor (not even my own GP) who said it was likely growing pains and showed me how to bandage them! Not once did any adult in the room point out I couldn't fit into my shoes or riding boots with bloody great bandages around my feet and ankles.
In my mid teens my SI joint started to really hurt especially in the early hours of the morning. and would often wake me. I still get this now and it feels like my entire midriff has been vacuum packed!
I've given up worrying about the 'Undifferentiated' nature of my diagnosis because, like you, I feel that I am coasting perfectly well with hydroxychloroquine, etoricoxib and occasionally steroids ( I have, it appears, little signs of lots of things, synovial inflammation on a scan, blood clotting antibodies, Raynauds, low platelets to name a few and it was once suggested by consultant that AS could also be a possibility) but reading your reply about AS developing slowly makes me wonder if I might have had better outcome if my parents had taken it more seriously when I was young. We also have hypermobility in the family and my daughter particularly bad in her feet and ankles but unlike my parents who seemed not to give a toss my daughter is seen regularly by her consultant and the podiatirst to make sure that she gets the best orthotics, does her exercises (OK - that is harder as she is 14!) and wears the right shoes etc. I hope by doing all this and educating her she will understand how important it is to take the medical advice seriously and reduce problems she might otherwise have in later life.
Unfortunately I think those of us who have had AS for years undiagnosed, our outcome wouldn’t be much different as in those days or certainly mine, biologics weren’t an option, only nsaids were used to treat. Having AS for years it should be easy to diagnose with a stir sequence mri, which highlights inflammation, and would almost certainly show classic signs at the SI joint. I was told in 1999, that there were serious issues with my lower back, but was too taken aback to question further as I was only 33. I’d had so many episodes of severe back pain over the years, always blamed on my career as a trauma nurse. I trained before hoists were a thing, and used to carry a patient using what was known as the Australian lift, where 2 nurses carried a patient on their backs, from bed to chair. So was always told “what do you expect”. The vacuum sensation you mention, I definitely empathise with, my chest expansion is 0.8cm, when it should be 5cm. Areas of my lung have collapsed due to the lack of expansion, and I have scarring on my lungs, As a result I can’t lie flat, when I had to medically retire, I purchased an electric bed so I could sleep elevated. I feel I’m suffocating if I lie flat. My daughter is also hyper mobility, she has been struggling with similar back issues to what I had, and is currently being investigated for AS. The good thing is at least she’ll have the option of biologics to slow progression, so hopefully should never get as bad as me 🤞🤗
When I was first diagnosed, I was put on hydroxyc. and sulfasalazine which, I think is for spinal involvement either as a result of PsA or AS, but it didn't agree with me. It's the only drug I haven't been able to tolerate so I went on methotrexatefor a while. But it wasn't explained to me at the time why that drug had been chosen. I was in the dark about it all. That was about 3 years ago and at my last rheumatology appointment a coupe of weeks ago a blood test for AS was ordered. I suppose putting all the symptoms together I can see it points in that direction but I do feel that overall things haven't got desparetly worse over the years although the feet and ankles are bad enough to make me limp and hobble and the sacroliliac and coccyx thing are a real pain in the bum. Walking hurts, so does sitting. feels some days that I can't do anything comfortably!
Did you have lung/breathing issues when you were a child too?
No I didn’t have lung issues. I did develop asthma in my mid 30s, and have needed steroid inhalers ever since. My chest always felt tight, so the measurements made sense. It was only in 2021 I started getting short of breath easily, which didn’t improve by changing my asthma meds. Gp ordered a high resolution CT, which came back with pulmonary fibrosis. I was urgently referred to a respiratory specialist, who monitors it. My rheumatologist initially stopped my MTX, but she restarted it, saying research has changed showing MTX delays pulmonary fibrosis, despite initially thinking it caused it. So I continue on my MTX, and get yearly lung function tests to make sure things aren’t worsening
Hi Jan
The vaccines have certainly triggered auto-immune conditions in some people. It worsened my asthma significantly. The manufacturers have stated that they designed the vaccines to provoke a strong immune response, that seems to have backfired in some people, triggering the same overreaction of the immune system that covid can.
Best of luck dealing with the AS
Jenny
Whent to isle of man they have had a lot of people over 1000 with problems. I was told one woman's leg who is a runner has turned all black. Should be something on net about this. As he told me they where going to sue. I have problems that came on after COVID and had all my injections . Ain't going for any boosters now. Bad leg ankle and knee and opposite hip.
It is possible that the vaccine or covid itself could make you more at risk of increased symptoms due to micronutrient depletion. B12, B9 and B6 are likely to be affected as well as magnesium, vit C, vit D, zinc etc - all the usual 'stress' reduced ones. Did you ever resolve your B12 issue and are you supplementing? As I see it, your high homocysteine went down with B12, your tinnitus got worse when you stopped the supplementation, you have fibro which could be B vitamin deficiency affected (and magnesium deficiency) if not directly caused by deficiency, and these Bs, especially B9 (folate) are often low with AS pubmed.ncbi.nlm.nih.gov/353....
Bear in mind that you do not need to have low serum B12 or high MMA or high homocysteine to have a B deficiency which can improve with treatment (or macrocytosis, or anaemia....)
Best wishes
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