auto immune sufferers ,antibodies ,vaccinations and flares

[peridito]

I know various people with autoimmune conditions who are on a variety of regimes to suppress their immune systems .
Obviously contracting covid needs to be guarded against ,but doesn't the increase of antibodies by boosters and vaccinations have a deleterious effect on their condition ? Causing flares ?

Can I ask about the medical advice when diagnosed with an autoimmune condition (or two).
Is the advice to have the vaccinations for covid?
Is the evidence supporting the benefits outweighing the risk?
Tia

yeah ,that's what I'd like to know more about .....

Hi OP,
I have an auto-immune condition (alopecia) and I asked my consultant about this precise question. She didn't feel that it was a cause for concern and I went ahead and had my jabs, without any evidence of a flare-up connected to the vaccine.

I'm guessing that the risk of a flare up is likely to be at least as high and in all probability higher if you actially contract covid.

Am I right in thinking that the immune response your body needs to mount against covid causes all sorts of inflammation and is responsible for the condition known as long covid, ie that long covid is an immune response gone rogue?
If so, it seems possible that covid will trigger whatever auto-immune condition you have, since these essentially are rogue immune responses.

I want to say, too, that it is reasonable and rational to worry about these things. When I worried about them I felt guilty for my 'vaccine hesitancy'. But it's a legit concern. Having had my jabs and booster, though , I feelt very confident it was the right thing for me.

Yes autoimmune flares are happening in some people post vaccines but sadly the response from doctors has varied from denial, to avoiding seeing these patients, to advice from some not to have any more of these vaccines. I feel people with autoimmune conditions are being badly let down.

So this is anecdotal but I found my autoimmune problems were really exacerbated by having COVID. Everything got worse and I got long COVID, which in my case seems to be some form of mast cell activation syndrome (this is not confirmed yet). As a consequence I was eager to be vaccinated/boosted in an attempt to avoid further disease (I had COVID twice prior to vaccination and am one of the people who dont make antibodies to it). Vaccines made my autoimmune conditions neither better or worse. It's effectiveness is just being tested as ds2 is currently positive and - so far - I am not.

Random I'm guessing that the risk of a flare up is likely to be at least as high and in all probability higher if you actially contract covid

Of course !I hadn't thought of that .

Yes DrNo - the people I know are really suffering at the moment .But I don't know what the answer is . Steroids ??

So there is a risk of flair up following the vaccination.
But that versus probable death if contracting covid if not in the i initial stages of the infection, likely by life limiting long covid.

That’s a tough choice for anyone.

I’ve had 2 Covid vaccines and the booster which didn’t cause flares. Although my auto immune condition is always active and I’ve not been in remission for the past 3 years, the vaccines didn’t make me any worse. My concern is that all my immunosuppressants will stop me mounting a good response to the vaccines. Saying that I have Covid for the second time at present and it seems mild so far.

The infection fatality rate for actual covid has always been extremely low and with time and the new variants seems to be getting lower. Rate of adverse events from the vaccines is not known because the reporting is so bad—it was estimated that the VAERS system may be catching only 1%. So personally I am not reassured that actual Covid will produce worse flare ups but I respect others’ right to disagree on that.

I should add that I am far from young and had covid before the vaccines came out and it was mild—in common with everyone else I knew who caught it back in those early days. I know some were seriously affected but it seems relatively very few.

But it’s so individual isn’t it. There’s no set response.
So for you mild was a great escape but for someone else, same she, same autoimmune disease could be death or long term life limiting disability.
There’s no predictions, it’s all the (bad) luck of the draw.

She! Age meant to say!

Absolutely ,so individual .So difficult.

Both Covid itself and vaccines could cause a flare, but everyone is different. If you're on immunosuppressants you may not make many antibodies from the vaccines, you'd need to test for them.

Hi OP,

I have a form of arthritis that's similar to rheumatoid arthritis but not quite. I had my two jabs while pregnant on the advice of my rheumatologist. Due to being pregnant, my symptoms had improved somewhat as I understand is common with autoimmune disease.

Now this is totally anecdotal and may be a total coincidence, but when I had my first covid jab my symptoms improved even further. Same happened again on my second jab. I had my baby a few weeks ago, and I had my booster jab last week. After the booster jab, my symptoms have completely disappeared!

I don't know what to make of it, my rheumatologist said it could be that the immune response caused by the vaccine prompted my immune system to "reboot", in a sense? Or maybe it's a coincidence after all.

Anyway, now I'm no longer pregnant I am bracing myself for my symptoms to flare up again soon, as I understand this tends to happen. But it was nice while it lasted, and maybe is interesting!

Anyway, ultimately I'd just follow whatever your rheumatologist advises

I should add that in the past, routine vaccines have caused me moderate flare ups so I really was expecting the same with the covid jab, but luckily not!

I suffer with several autoimmune conditions and worry that that makes me more susceptible to a cytokine storm - is anyone aware of that being the case or not? Thanks.

CiderWithLizzie this has worried me too as I know my immune system overreacts but covid was very very mild for me. I’ve had two Pfizer and Pfizer booster plus covid (Delta). I felt worse after the booster than I did with actual covid. I think with each vaccine and after infection there has been a flare up of my symptoms but they’ve been short lived and it’s hard to tell if I’m imagining things. My bloods in a couple of weeks will hopefully give me more of an idea.

I've got psoriasis triggered by two AZ jags. It's absolutely horrendous and I've never had psoriasis in my life before. All I can do is report to the Yellow Card scheme.