Vaccination: Has anyone with SLE Lupus, felt unwell... - LUPUS UK


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Has anyone with SLE Lupus, felt unwell or had flare type symptoms for several weeks following vaccination ~ AstraZenica?

14 Replies

No I think it’s fair to say the majority of us have been unwell for a few days then fine. There’s been several threads regarding this. One or two people have been unlucky and had flare ups.I’m curious to know why you’re asking this. Do you have lupus are you worried about getting the vaccine?

Kildonan in reply to panther50

Thank you, I have Lupus, but not currently on any immunosuppant medication. Had my vaccination ~ AstraZenica about 2 and a half weeks ago, only had relatively mild side effects for the day or two afterwards as anticipated (sore, hot arm, nausea brief overnight chills and a little woozy and weak .... but have felt increasingly unwell since then, with flare type symptoms extreme fatigue, painful joints and muscles. Only just joined "Unlocked" as struggling to get information or guidance. This is in no way anti~vaccination, I'm totally in favour .. simply seeking some reassurance.

panther50 in reply to Kildonan

Hi Kildonan sorry to hear that you’ve been feeling increasingly unwell. Your initial side effects sound like mine. There have been one or two people experiencing flares here afterwards (not just AZ) Sorry, didn’t mean to grill you I only asked because there have been one or two anti-vax people joining to spread scare stories- I thought they might reply & I didn’t want you to get a distorted impression if you were still deciding. Most people have been fine. I too checked here before having mine and was relieved to see that.

Are you able to speak to your rheumatologist to see if maybe you can get a short course of treatment to calm your immune system down again?

ShannonB in reply to Kildonan

I’m very sorry to hear that. I was similar and am still struggling eight weeks in. Search for my posts. I’m also very pro vaccine but can’t have second jab now and very sad. Also worried as I still have erratic heartrate and exhaustion. Please report your symptoms in yellow card and make sure your rheumatologist reports then through RAIDRA. Take good care of yourself xx

HiI had the phizer and was ok after the first one, just a sore arm and slightly achy but after the second dose I was in bed for 3 days after, fever, muscle aches and what felt like pain inside my bones. I couldn’t even bend my toes. I feel better now, but I think it has aggravated my lupus

What a shame, I'm glad to hear it's a little better now .... I'm trying to hold onto the thought "no pain, no gain." 🤣👍

Yes, same here, better than getting covid😊

HiI had AZ at start of Feb. Really poorly for a few days then picked up but two weeks later hit a massive flare which is still ongoing. I am on immune suppressants plus hydroxy and some. Haven’t felt this off since pre meds. Having second vaccine in a couple of weeks so hopefully get that done and take it easy and all will settle next couple of months. It feels bad but Covid would be far worse so just going to be patient and ride the flare. Rheumy department can’t suggest much other than rest and recoup and keep monthly bloods done. I think anyone else experiencing the same should make doctors aware and then be kind to themselves. A flare is a flare whatever triggers it so be prepared be ready to rest up and be positive xx

I forgot to say welcome to the forum earlier! 😀😀 It's a lovely supportive place, with others who understand and can share their experiences of SLE.

Kildonan in reply to panther50

Thank you for the lovely warm welcome & to everyone for the helpful comments and suggestions ... I really appreciate them. To all feeling unwell, I hope you feel better soon ... take care & stay safe. Thank you X

Yes!! I have been really unwell with an horrendous flare, weird nerve pain, rashes and swellings, I couldnt even sleep, at night all I was fit to move were my eyes in bed! I really was scared the pain would never stop. Ive had lots of lupus complications in the past but this flare has been the worst. I had telephone appt with my Rheummy and blood work due to be done next week at hospital with a view to starting heavier meds but Ive now made the connection to the flare and the timing of the vaccine. I had AZ and I believe it put my lupus into overdrive. Its only been this past few days Im starting to feel normal again, ofcourse I still have my regular lupus symptoms, but the horrendous pain and fatigue has now passed after 9 weeks. I cant put into words how raging this flare has been. So yes I believe for some of us the vaccine has caused an never ending flare.

Cardih in reply to Shann07

Hi Shann07

Glad you are starting to feel better now.

Hopefully it continues and you back to your old self soon x

Hello yes I have. Was ok straight after my AZ jab then 7 to 10 days later had a really bad flare. I usually have a kenelog to settle things down so went to see Rheumatologist. He confirmed it to be a flare as a result of my jab. His advice was to not have the kenelog but to ride things out if I could until 4 weeks after my next Covid jab and then it would be appropriate to give me a Kenelog to settle down the flare. This obviously was advice for me and I guess we are all different but the point I’m trying to make is that it’s important to have the second jab !

Kildonan in reply to Missie12

Thank you all for your thoughtful replies & for the warm welcome .... I really appreciate them .... I do hope everyone experiencing flare, whatever the reasons feels better soon. My thanks for all the helpful suggestions ... take care & stay safe. X

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