year long flare after vaccine

[ElroyM]

has anyone been affected by the vaccine?

my lupus has been relatively under control for ten years.

Following the second vaccine my lupus indicators went from 100 to 400 and no matter how many extra drugs I take I can’t seem to get it back down.

would love to know if anyone else experienced the same?

thanks

[bathouse]

Hello

I had a flare/reaction after my first AZ jab. Tingling in face,awful fatigue, joint and muscle pain and a flare of sacroiliitis. All was fairly stable before the jab. Had to increase my Hydroxychloroquine to 400mg daily and introduce Mepacrine which helped greatly. I also had an 8 week course of tapering steroids which were a godsend!

I have been great for a while but now suffering with stiffness and puffy hands every morning!

Hope you feel better soon, what symptoms are you getting? X

[ElroyM in reply to bathouse]

Interesting to know.. sorry to hear but glad you’ve had some relief My symptoms were : Extreme fatigue, protein in urine, possible kidney damage, joint pain - especially in back and hips with swollen feet especially on the sole, brain fog. Worst is that chronic migraines started soon after and have persisted.

I also had the AZ. I just can’t seem to bring flare down - was on methotrexate for 6 months now on mycophenolate along with hydroxycloroquine, steriods and ramipril.

I honestly wish I had never taken the vaccine I was doing so well before.

[RosieA]

Yes, I have UCTD and have reacted to the flu jab for three successive years. Initially, it was limited (time wise) costochondritis. Last year it just didn't resolve, even after 7 months of steroids. I am left with constant costochondritis. It also inflamed my Plantar F which I have battled with for 3 years. Just resolved it with a steroid jab - then had the flu jab and bingo- back it came in spades. Also, my disease flared in general, malar rashes, ulcers etc which means had to increase HDX to 400mg (above weight recommendation). I am not having the flu jab this year as I suspect, that as each year the reaction has got stronger and longer it could create greater havoc. It's a worry isn't it, the devil you do, the devil you don't. x

[ElroyM in reply to RosieA]

Thanks Rosie.. yes you’re right. Hard to know what to do. But for me I don’t think I’ll risk another vaccine. Don’t know which one is worse in the long run.Sorry to hear your condition got worse!

We just need to keep going hoping things will change x

[Hidden]

Note my diagnosis is Stills Disease which for me manifests as RA. Many similarities to Lupus in my case.I’ve managed drug free since my mid 20s following diagnosis at 17.

After AZ 1 I experienced a minor flare which persisted.

The same with AZ 2 but less with Pfizer 3.

I will get vax 4 in a couple of months.

[Beau2016]

Hi there, I know this is an old post but just wanted to say the same has happened to me. I was diagnosed with lupus 8 years ago and in 2019-2020 I was in remission was just taking maintenance dose of hcq . I had 3 covid vaccines and was progressively more ill with each. I haven't been able to get anywhere my level of health from 3 years ago. I also caught covid for the first time after 3 vaccinations and am now being investigated for heart condition related to long covid. I regret having them and have declined any boosters.