Flare up after covid jab?: Anyone... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Flare up after covid jab?

momo17 profile image
momo17

Anyone experiencing flare of symptoms after jab? I had mine on 9th feb n altho just had normal side effects of injection couple of days afterwards, I feel that maybe my scleroderma gotten worse again with skin tightening and pain/tiredness. Could just be coincidence but wondered if anyone else experiencing similar.

29 Replies

I had exactly the same and still suffering the flare up. Not sure what going on but it was definitely the jab as I’ve been reasonably maintained for awhile AZ jab

momo17 profile image
momo17 in reply to Itsanuisance

That’s how I feel. Prior to jab I felt my scleroderma was maintained too. Still had a lot going on but I felt it had kinda plateued. Hope it is short lived for us both. Thank you Lynda for you reassurance n please don’t let this put you off coser.

I have had first jab but no side effects. Hope yours settle down soon

coser profile image
coser in reply to Lyndabickley

I am a little worried about my upcoming jab because aside from Schleroderma and Raynauds I have mild asthma and I smoke

Lyndabickley profile image
Lyndabickley in reply to coser

If you are concerned check with your GP, but you should be OK. It’s important to be protected from COVID.

Yes I’m the same, have been suffering more fatigue and morning stiffness since first injection. Nothing terrible but definitely more than normal. Had second dose yesterday and feeling crappy today. Hopefully it will settle soon. I’m not regretting getting the vaccination though as the annual flu jag often makes me feel like this for a while.

That’s good you now have had your second dose midgebite but shame you’re feeling the side effects. I’m the same - no regrets it had to be done but just disappointing we’re in a catch 22 situation. Hope you feel better soon

Yes I am having similar symptoms to those i had pre diagnosis. I really hope it settles as have very mild Scleroderma and want it to stay that way.

Gosh yes. I hope so. That’s really interesting to hear your scleroderma symptoms are generally mild. I tend to think of it now as such a progressive disease. I didn’t take medication initially n annoyed at myself for allowing it to develop into something so serious. Interesting to hear it could’ve went either way.

tanya1981 profile image
tanya1981 in reply to momo17

Hi momo17,How long have you been diagnosed with a scleroderma for and what do you mean by the above? We’re you prescribed medication that you didn’t take? How has your scleroderma developed over the years?

momo17 profile image
momo17 in reply to tanya1981

Hi Tanya. I was diagnosed about 8/9 years ago n initially it was MCTD n I got prescribed quinoric. It did nothing for me so for a while I took nothing. At which stage it moved towards scleroderma n because the quinoric had done nothing I refused mycophenolate. That’s when the lung disease developed and my disease was progressing rapidly. It’s now more stable on highest dose mycophenolate n 7.5mg prednisone n nifedipine and lansoprazole. I still have a lot of issues as do all sufferers but felt they were steady prior to jab. Feel like they’ve stirred up a bit more since then.

tanya1981 profile image
tanya1981 in reply to momo17

Sorry to hear about that momo.. what kind of lung disease did you get? Lung fibrosis or Pulmonary hypertension? do you think you made the wrong choice by staying away from drugs over those first few years? It’s sad that you’ve been so good with your eating, hydration and exercise over the years and it still didn’t make a difference:(

momo17 profile image
momo17 in reply to tanya1981

Thank you. I have interstitial lung disease (lung fibrosis). For me I feel it was the wrong choice as my lungs have stabilised at around 63% DCLO since taking medication but possibly not everyone has same experience. I wouldn’t want to scare anyone into taking medication if they felt it wasn’t for them. Not everyone ends up with lung involvement. I was just poorly advised on how progressively my scleroderma was developing n I wasn’t aware that ILD was a real possibility.

tanya1981 profile image
tanya1981 in reply to momo17

I understand- sincerely hope you keep the disease at bay now with the various medications you’re on x

Sorry to hear you had difficulties....whilst I had a reaction to the AZ jab like many others (chills/flu like) it only seemed to last 24 hours with slight tiredness/lack of stamina over following week.

Yes, I did for 2 weeks.

Yes, I had a dreadful time after the jab for about 10 days and vertigo as well as all my usual issues Ax

Hi Everyone

I really hope everything settles down for you all.

I myself have (crest) Scleroderma, sjorgrens and osteo arthritis , i was diagnosed 3 years ago and things just keep progressing, however i am NOT having the vaccine , it is an experimental drug (it says so on the Pharma websites and the Government websites) and the results won,t be known till 2023 ! I have already had covid at christmas, I was so ill i didn't open my presents till 5th January, I am sure that i now have the antibodies and will rely upon my own immune system to find it off If i get it again ....

Please stay as well as you can take care of yourselves ...

Much love Cathie x

I had 2nd vaccine, 14 days later developed shingles. Having researched this as a possible side effect it appears that a handful of people have developed shingles post vacc. Could be coincidental . Rather have shingles than covid. Hope youre feeling better

momo17 profile image
momo17 in reply to 123Claire

Thank you Claire. I feel I am slowly. That’s really unfortunate you got shingles. I have 2nd jab fri. Hope you are over the worst now. Take care

Hello this is a really supportive thread ❤️

A bit different but might be linked -

My daughter had Covid and a month after she started to experience symptoms that look like scleroderma. She has icy hands and now (severe raynauds) and blisters that are very sore as well as other skin issues on front ankles etc so I suspect scleroderma having researched a lot plus she has had blood test showing ana antibodies...

I wonder if it long Covid or triggered by it Covid. The post viral affects seem to have started this immune response.

We are waiting to see a rheumatologist to investigate further.

momo17 profile image
momo17 in reply to Vervena1

Hi, i'm so sorry to hear that. I know my first symptoms of scleroderma appeared after a particularly stressful time in my life. Not illness as such but I was going through a break up when a close relative died and next I knew I woke up with my right hand all swollen and massive. Things progressed from there so obviously I'm no doctor but I would imagine something so stressful as covid could trigger it as like you say all immune response related. Good luck with her rheumatology appointment. I've just had 2nd jab on friday and was so cold and achey last couple of days, the 48 hours much worse than 1st time but feel alot better today so hopefully over worst.

tanya1981 profile image
tanya1981 in reply to momo17

Agreed with mono- scleroderma typicallyKicks in after a stressful (physical or emotional) period In life. It is also exacerbated by any hormonal changes (pregnancies, breastfeeding, etc). You may have the pre-disposition in your genes to develop the disease, however it may never surface up and develop into the real scleroderma. So a virus could certainly trigger it but there might be other conditions triggered so you have to do the relevant blood tests too.

Thanks for your really fast response ⭐️How were you diagnosed?

It took over a year as my high ana’s were missed at my gp practice. By the time I was referred to rheumatologist n seen him, it was straight away that he diagnosed me but initially it was mixed connective tissue disease he said then later scleroderma when they seen the skin involvement with secondary raynauds n sjogrens. Tbh I think they’re all just a case of a tick list for all the different auto immune conditions n they go with the one you’re showing the most signs of. Shiny tight skin usually scleroderma I think but a lot of the other symptoms cross over.

Hi Momo,I definitely had a flare up after having Covid around Christmas so I won’t be surprised if you get a response from the jab too. I hope you feel much better by now

momo17 profile image
momo17 in reply to tanya1981

Yes thanks Tanya. Today I feel back to my normal I would say as regards the post jab symptoms. The next few weeks I will see how my actual illness responds. It’s such a tricky one. We need the jab but the last thing we need really is an immune response! How did you fair with covid? Were you very ill? You must’ve been so scared.

tanya1981 profile image
tanya1981 in reply to momo17

Hi again,I was a bit worried when I caught it but tried to keep a positive attitude. It wasn’t as bad as I thought it might be but just continued foe way too long ( a whole month). Symptoms were in a be off and I had some hours in the day when I had to lie in bad and rest and others (in the same day) when I was full of energy! It was such a weird and unpredictable disease experience....

Keep well and crossing fingers for no more adverse effects from the jab

momo17 profile image
momo17 in reply to tanya1981

Thanks. Take care too. Glad the virus wasn’t as bad as expected

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