I’m in the early stages of being diagnosed with Lupus (I am almost 23 years of age with symptoms for years). I got my Pfizer second dose on Saturday and couldn’t get out of bed on Sunday between tiredness, aches and pains and a headache.
It is now 5 days later and I’m feeling pretty much the same just my sore arm is gone now. I have an issue with my wrist (being checked for arthritis) and it’s like the pain in that has been multiplied since I got the vaccine, as well as back pain. I also have IBS and it’s like that has been flared up too. I can’t go a day without napping for 2-3 hours.
Has anyone experience longer lasting side effects/flare up after the vaccine?
I have phoned my GP and just waiting to hear back but not sure there is much they can do!
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ClodaghK
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HiI had the phizer vaccine and after my second dose I was in bed for 3 days, it floored me as well. It did flare my lupus,but it settled down. I had a lot of pain in my back too.
Sorry to hear that you felt unwell after it too. It definitely takes a large toll on our bodies, just hoping another few days of rest might just be the cure for me!
I had a bad reaction to AZ vaccine - day 9 to 16 - terrible headache - worst had in my life (aPL was checked and was normal so I think it was a bad flare). Headaches have continued for 3 months since but not so bad.
I had covid in March 2020 which may be another factor for me. I'm not sure whether it's due to the vaccine but some things have been worse since. The GP is not giving me a second jab until they receive advice from rheumatology on if I should have one, and, if so, which one. I wish there was more info out there on adverse reactions a few folk may be getting.
Most people I know who had the jab where fine..so I feel an odd case..as usual...
I’m so sorry to hear you suffered so much after the vaccine. I am just really hoping these symptoms subside in the next few days as I’m struggling to get through work or even stay awake at the moment.
I was fine after my first jab, just this second one has been a horrendous experience. It is the same with me, everyone I know has been fine or just had some symptoms for 1/2 days so I feel so silly for being this ill for so long but I guess that is just the joys isn’t it!
Yes I completely understand that you are scared to get it. I wish they could have explained the possible side effects and how they could last for an extended period of time to us before we get it. It’s day 6 now for me and still feeling the same, I could barely get out of the bed this morning and the tiredness and headache is intense. Let’s just hope it is all worth it!
I’m still flaring after my second AZ Jab. Note I have JRA not lupus but similar issues. Very bad flare, worst in years 😫
I was fine after the first jab but after the second l had a flare with joints, rash etc which led to my diagnosis of Lupus. Before that I had many issues eg blood in urine, mouth ulcers etc but it hadn't been all put together. However even if l knew what would happen, l still would have had the vaccine, as l have lost so many colleagues to covid.
That is so strange that it led to your diagnosis! But I guess it was also a bit of a relief for you to know for sure it was Lupus that had been causing all of those issues for you.
I totally agree with you, people have suffered so much and if this is what we need to do to protect each other, it is worth it. I am so sorry to hear you have lost people, let’s hope it is onwards and upwards from here x
Hi, so sorry you are feeling awful. I hope things improve.I had AZ in February and had an allergic reaction. I was admitted to hospital for three days. My rheumatologist and haematologist have told me to "delay having the second jab and are now thinking about giving me Pfizer (two jabs) when my intensive infusion treatment has finished.
It is tricky especially as they are changing the rules for people vaccinated and leaving vulnerable groups like us in a bit of no man land!
I shall keep wearing my mask and shielding as much as I can.
So sorry to hear you had a bad reaction! Yes I totally agree and they just don’t know a lot themselves either. I guess people are presenting with new side effects every day and it will be a long time until they know for sure.
Hi, I had two doses of Pfizer and had symptoms that mimicked a real full blown flare. Unfortunately I had the second dose after three weeks of the first and just as I was feeling a bit better. So in the end the second one made me ill for nearly three months. The pain did ease a bit little by little as time went on. But I experienced some pains that I' ve never hadbefore such as mouth ulcer and nerve pain shooting from teeth to the eye socket area. It was at times really scary and I went to see my dentist.
I heard from someone who has Covid and later had Pfizer months later. She reported that she felt the degree of painful symptoms were the same. But you don't have a choice. You must go for the second and the booster eventually. Hope you feel better soon. Make sure to eat well and drink lots of water!!
The same as me, this has happened after my second dose! I’m on day 7 now and have awful mouth ulcers too, it’s just as if my body is completely and utterly run down. I really get the pains, I could cry every day with the pain from my lower back and my wrist - it’s so tough.
Have family events all weekend and honestly don’t know how I will get through them but we struggle on as much as we can I guess!
The tiredness is still as intense as ever, I’m up at 8am every morning and today I got a shock when I didn’t wake until 12pm! But my body needed that.
I will do and trying my best to nurture & look after my body as much as possible during this spell!
Hey ClodaghK, Sorry your having a horrible time with the second shot. I got covid in April this year ans my symptoms were so mild I thought it was my Nuetropenia instead of lupus. No fever or much else. Tired for one day, but lost taste for over 2 months. I got my first vaccine in May, only a sore arm for 4 days. My second shot was not so nice. Sore joints and mouth sores for over a week. I had an assessment for work so took a few days of Prednisone which helped a ton. Now I feel pretty good. Mouth sores and nose sore have almost gone. I was looking at it in a way that maybe it means I'm building an immunity to it this time because the first one I felt nothing. Who knows as we still are not given tests to see if we have built up an immunity to it yet.
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