Covid vaccine caused flair: Has anyone experienced... - LUPUS UK

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Covid vaccine caused flair

joannebond360 profile image
30 Replies

Has anyone experienced a flair after the covid vaccine? I’ve been in remission for two years and since the covid vaccine, everything has flared up!

30 Replies
PMRpro profile image
PMRpro

Not lupus - but there are quite a lot of us on the PMRGCA forum who have had a resurgence of symptoms after a shot. No pattern, a couple of days to a few weeks, mainly fatigue and all varieties of vaccine. A few new members whose PMR appeared soon after a shot - but also one or two who had Covid and then were newly diagnosed with PMR though I think that may also be Long Covid.

miccika1 profile image
miccika1

Which one did you get? I got Moderna and didnt have any more flare ups since then, mine stayed on their regular schedule.

ShannonB profile image
ShannonB

Yes I have had a lot of problems and been hospitalised w a flare affecting my heart. Please make sure your rheumatologist reports this to the rheumatology alliance as these cases are being under reported. I know we are exceptional but want to make sure they know! I’m sorry you are struggling and send you healing thoughts. Feel better.

joannebond360 profile image
joannebond360 in reply to ShannonB

Thank you for your reply. I am so sorry to hear that you have hospitalised, I hope you feel better very soon. I have reported it. I had a flare after the first and second vaccine. Get well soon 🥰

mickyb profile image
mickyb in reply to joannebond360

Hello .....did you have to stop any of your medications before or after the vaccination ??

ShannonB profile image
ShannonB

Good you reported it and really sorry. What vaccine did you get? I haven’t had the second because of all the issues and don’t know what to do about that. :(

joannebond360 profile image
joannebond360 in reply to ShannonB

I had the phizer one. I didn’t want to have the second one because of all the issues but also petrified of covid! Hopefully it all settles down soon 😊

ShannonB profile image
ShannonB

I had AZ but it doesn’t seem to be vaccine specific based on what I’m seeing on here. Most people seem to be fine/mild side effects and then there is a group of us who aren’t.

joannebond360 profile image
joannebond360 in reply to ShannonB

I had the Pfizer one. I react to the flu jab also and that gives me a flare up so I haven’t had one for the last 3 years 🙈

mickyb profile image
mickyb in reply to ShannonB

Hello .....did you have to stop any of your medications before or after the vaccination ??

ShannonB profile image
ShannonB in reply to mickyb

It’s advised to stop methotrexate but not the meds I’m on. So no I was in my taking my normal dose of everything.

cuttysark profile image
cuttysark

I had my first Pfizer jab ob Feb 6th and have had a huge flare of all aspects of my connective tissue disease. It is Lupus like but only positive ANA in bloods.I also have vasculitis mostly affecting my brain and have had a few strokes due to this.

The vaccine has had the worst affect on my adrenal insufficiency problem with levels still totally haywire and frequent alarming crashes. This happened immediately after the vaccine, within a day.

Other problems were mainly heart issues and ongoing pericarditis and possible myocarditis also.

All the other issues, I wont list them all, are all the other symptoms I have ever had with this disease over decades.

I know I have been unfortunate and the vast majority of folk are fine.

I had to have the vaccine but was advised to avoid the second which is not ideal but too much of a risk.

My Rheumy has reported all this as I have also to the ZOE App of Tim Spector.

I react very badly to many medications and have to avoid the flu vaccine also after bad reactions.

So maybe I am not a good subject to be looked at with this!! It was possibly inevitable I would react badly.

What is frustrating is that I am not out of this flare yet but hope it will eventually settle . I am on three times the steroids I was on this time last year.

Sadly trials with methotrexate and Azathioprine also caused serious reactions so I am stuck with the steroids.

Hopefully most people have only a mild short lived flare from the vaccine, if at all.

Interestingly I think I did have Covid right at the beginning of the outbreak. After attending a very busy local hospital clinic packed with people close together, I developed a high temperature, dry cough, then severe cough and loss of taste and smell. It took weeks to recover. Two of my family had the same also with severe cough and high temperature.

Maybe that is why my reaction was worse.

ShannonB profile image
ShannonB in reply to cuttysark

I tried to report to ZOE but the survey really didn’t give an option. How did you reach out to them?

cuttysark profile image
cuttysark in reply to ShannonB

Sorry just saw your reply. It was a while ago now but i just joined the Zoe site after the vaccine on 6th feb and there was a form about side effects then, which i filled in.I will go back on it and try to find out what to do and get back to you when I know.

ShannonB profile image
ShannonB in reply to cuttysark

Thank you! I have tried replying to their emails but they are no reply and I found the surveys not very helpful (everytime I fill one out and am honest about my symptoms I get a note requesting that I take a covid test!) Would appreciate a way to let ZOE know about my experience.

Paprika60 profile image
Paprika60

Sorry to hear that. I have had two Pfizer doses with three weeks apart. And yes, I have had one of the worst flares ever. I have been extra unwell ever since first jab in Feb. The first three weeks I couldn't do anything. Just read an article that people with Rheumatoid Arthritis have had shingles attacks after Pfizer in Israel and they are doing a study now. Yes, I normally do not take flu jab as I get very ill from it. So clearly we are in a similar situation. Hope you feel better very soon. x

CavendishCool profile image
CavendishCool

Yes!! Had my second injection on Tuesday and OMG I'm covered in a rash that looks as if I've had boiling hot water chucked over me. Itching all the time, but goes up a gear after 7pm as do all my symptoms. Joint pain and nausea chucked in for good measure too. It has to be the injection. The nurse that gave me mine said that a lot more people in the general population had experienced more side affects with the second than the first. I had Pfizer. She also said that I would have to have a booster for the Winter too. Oh Joy! Can't wait! The nurse also advised and in her medical opinion that it was really important for auto immune compromised patients to be fully vaccinated before the Winter and to also not go mad when the restrictions are relaxed again on Monday as obviously C-19 is still in circulation. My nurse is lovely, I have known her over 20 years and she's a tough cookie. She said to expect side affects especially with Lupus and she also said how sorry she was, as it can be at minimum a low level feeling miserable on your good days disease. I do hope your side effects disappear soon and you get back to remission. I've only just started on my Lupus journey, completed my first month on Hydroxychloroquine so still trying to come to terms with all that it means, but I do feel less sorry for myself after joining the forum and reading lots of other Lupus journeys. I wish you well.

Sevenstar profile image
Sevenstar in reply to CavendishCool

I'm starting the same journey as you from today , it all stinks doesn't it ! How are you getting on with the hydroxychorquine , have you had many side effects, I would love to know what to expect 😊?

CavendishCool profile image
CavendishCool in reply to Sevenstar

Hi there, I would say that don't expect anything is the safest, but thanks for reaching out. I'm feeling very sorry for myself today. I've been to the doctor with the Lupus rash that is so bad and covers my torso and arms and he thinks it could be an allergic reaction to either the second Covid or Hydroxychloroquine or it might be a Lupus flare - he doesn't really know or think that a Lupus flare rash would be hot or itchy though. I have a course of 6 days steroids which I'm feeling very down about. I think the real problem is that I'm finding it hard to accept my diagnosis of Lupus as I feel it is defining who I am and out of control. I've had this rash for a week and it's very debilitating and it doesn't really help when people say it could be worse 😕 it feels pretty bad to me. I think the key is acceptance. I wish you well on your journey. I wish I could be more helpful. Best wishes x

Sevenstar profile image
Sevenstar in reply to CavendishCool

Actually it's very helpful, there are so many ifs and buts ! I can understand how uncomfortable you must feel , my whole face is hot and red , I feel very ugly ! One thing I do know is whilst you might not like the idea of steroids , they do calm it all down and make you feel well ( like the old days ) ! I'm with you , the diagnosis is a slap in the face but now at least we know what's going on , so good luck and I hope you begin to feel better soon x

CavendishCool profile image
CavendishCool in reply to Sevenstar

Thank you. I think one of the worst bits is the rash makes me feel grubby. I can't even have a bath or shower because the pain afterwards is so extreme that nothing soothes it. I'm scared because I feel like I'm on a slippery slope of medications for everything and then medications for those side affects. I'm so sorry you're face is bad and you feel it is, I do know what you feel like, you have my empathy. Feel better soon. Thank you for reading and encouragement.

Sevenstar profile image
Sevenstar in reply to CavendishCool

Well we're starting this journey together so we can swap notes at least ! I'm scared too and I miss the old me , let's stay strong 💪🏻 !

CavendishCool profile image
CavendishCool in reply to Sevenstar

I think notes is a good idea. Apparently the steroids will give me some energy! That's the fatigue done!! Stay strong too 💪 ❤

Roarah profile image
Roarah

My hematologist is running an informal study of his APS and other thrombotic patients to see if the vaccines effect many different markers. Before vaccine he took an ANA, antiphospholipid panel, metabolic and CBC plus d-dimer, factor viii, vwf and antigen and anti factor 4. He repeated the tests a few days after my first moderna shot and again five weeks later a few days after my second shot and again two weeks after I reached full immunity.

Ironically all my numbers improved after my vaccinations! My factor viii and VWF were both highly elevated before vaccination and are now in normal range and my d dimer, which was normal and is still normal but it too went down. All lupus markers are normal. And a fourteen year planters wart on my toe fell off after my second shot. T cells improvement maybe or more likely correlation.

A two year remission is a long run it might just be correlation not causation. But I hope you feel better soon.

Here is an article where my hematologist mentions why he is tracking his female patients. I am so lucky to have the best care team ever!

google.com/amp/s/amp.theatl...

joannebond360 profile image
joannebond360

Thank you so much guys, it’s so good to hear all of your experiences and to have your input. Hopefully everyone feels better very soon xxx

StriatedCaracara profile image
StriatedCaracara

After only mild reaction in first day or two, I had a bad reaction to first AZ starting Day 9.

I had covid and then long covid last year, so think this might be why reaction was different.

I took aspirin for bad headaches. I also got shortness of breath on exertion.

I feel alone though, because most people fortunately report being fine.

There must be an explanation.

Hope you are feeling bit better.

That’s because the covid vaccine exacerbates everything, including inflammation of the brain which is exactly why I’m waiting for the experimental stage to be over before even considering this vaccine. Scary stuff.

MrsMarigold profile image
MrsMarigold

I’m fairly new to this site; especially in regards to posting. The vaccine does concern me a lot. I have lupus and neurological problems due to cervicalSpine surgery scar tissue in my spinal cord.

The effects are very similar to MS. The American School of Rheumatology advises

Patients to get the vaccine ( as of 4 months

Ago so I’m assuming it is the same) However my neurologist said he does not

Recommend it for his autoimmune patients.

After reading and constant questioning to

Family and friends I’ve been all set to

Have the vaccine. But I can’t seem to

Rid myself of the little voice inside that

Says No, wait. I have bloodwork and various Dr appointments all this month. I

Hope I can make a decision based on the

Science and not fear/or too much caution?

Having chronic disease issues keeps me

Home so much anyway. Does anyone else

Feel like that? Although I did recently

Fly to a faraway city to see my son. I’m

Not nervous about this with my mask

And hand gel and other precautions. Anyway, I’m okay after such long lockdown

To stay home mostly and wait. Some of us

I think are extraordinarily sensitive to

Vaccinations in general. Even going to have

Dental work for me can cause flares. I’m

Just not ready I guess until more information is released on the safety of these vaccines for for autoimmune disorders.

despowell profile image
despowell in reply to MrsMarigold

Just wondering did you take the vaccine yet and how has it been going if so? I’ve signed up for mine but so nervous about possible adverse reactions

MrsMarigold profile image
MrsMarigold

Hi despowell. No I have not. Still waiting on some blood tests that were delayed. But I have not changed my opinion yet about waiting. I wish I could be more help. For meMy immune system is so sensitive ( not like

I’m the only one!) truly I have to be careful

About simple dental procedures. Good luck

And let us know how you do. Most people are fine as I’ve read.

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