I live with SLE Lupus & Antiphosolipid Syndrome and had my 1st Covid Oxford AstraZeneca jab about 4 weeks ago. I've been pre-menopausal for about 4 yrs and on Sat I had unusual vaginal bleeding. I went to A&E on Sunday, they did full blood count and it was normal.
Siince this morning I can't walk on my left left as that knee is in so much pain. It feels like arthritis inflammation but I'm trying to assessing what's caused it. If it's gets worse, I'll phone me GP tomorrow but I know she'll tell me to rest it.
I don't know if keeping my legs straight helps the inflammation so I've been raising my legs so the blood is circulating.
I've surrendered to a day in bed because movement is just painful and tiring.
Have you had any usual flair ups or symptoms since having your Covid jab?
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magSLE
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Yes ! This same exact thing happened to me. I was bedridden for almost a month - finally came out of it after two rounds of prednisone taper. It’s been a month and a half since I was vaccinated and I still have a low grade fever and strange neurological symptoms. My rheumatologist thinks the vaccine is definitely the cause of the flare up. But I can’t imagine what it would be like to actually have Covid..... keep me updated!
Thx for mentioning the Neuro symptoms. My brain has been extra weird. Scary, but even my healthiest friends have reported strange changes in thinking, moods, sleep, etc. I think we just get a double whammy. I’m going to ask for a taper in a few weeks. I’m going on week 5 mostly in bed or on the couch.
Thanks for your reply. Sorry to read you were bedridden for a month post Covid jab. I was in bed for 2/3 after 1st jab. I'm waiting for 2nd one. Its day 2 of knee inflammation and I still can't walk on leg, I've had to postpone this AM hospital appt. My partner swears on Vicks Vaporub for every ailment lool....On further inspection from rubbing CBD, vices, Aloe Vera Gel on knee, I've noticed the pain is on inner side so I'm wondering if it's bruised...I'm a bit clumsy from meds and bump into things a lot but I can't remember doing it....I've just used (a gift) of magnesium spray and I'm going to have an Epsom Salt bath in a couple of hours. I forgot I have such things at home as I've not had pain like this for about a yr. I'm gonna spend the day balm and detoxing my body, in the hope I won't need to phone GP tomorrow. Be kind to yourself x
I don’t know what country/city you live in (if it’s legal) but I found high doses of CBD oil in a tincture (NO THC) to be extremely effective during my post vax flare. I only noticed relief at a high dose though. But it was pretty remarkable
The damned pain got to me too - so I also took CBD. I have highly concentrated CBD oil which I have been taking and it has helped back the pain down. I was surprised at how well it helped - I still hurt, but I’m not sitting and crying anymore at least. I am so done with this pain. I want my life back!
Yup. Definitely a mega flare up since shot #1. A week into shot #2 and still in a flare. Sucks. After the allotted ramp up time, I’m calling my rheumy to see if there’s anything thing to get it to chill out. The vaccine totally overrode the biologic I take and your not supposed to take steroids when you get it (makes it less effective). But, I’m pretty close to breaking point. Every flare / disease symptom is back. Even my butterfly, which has been gone for years!!
I was also on prednisone when I got both vaccines. I wonder if that has anything to do with it. I had the same experience! Every possible symptom flared up at one time. It’s pretty heavy on your mental state, but just know- you aren’t going crazy. That’s what I was thinking- lapse In memory (more than usual) and almost dissociation . my second shot was what knocked me out. After about a week after which was strange. But I feel almost back to normal (still some lingering memory issues and swelling) now! I know this time is incredibly tough. I’ve been there and hopefully your body will be able to calm down after a bit as well. Keep in touch!!!
4eversick - I also take prednisone. 5mg a day now. I hope the 2nd jab is kind to me. Glad to read you are recovering. Our bodies are adapting and sadly, it can be a chaotic process.
Thanks for your reply. I hope you recovery soon. I have butterfly scars on my face around my nose. I've been using vitamin E oil (that I've had for yrs and need to use). I think it may be helping with the scarring. Hope you've got some support for your daily needs. I'm rubbing all kinds of balms on my knee inflammation. Plus I'm gonna have an Estrogen test and may have to see a gynaecologist at some point as the unusual vaginal bleeding needs investigating. Take care. x
magSLE I’m sorry your knee is acting up :(. Vitamin 3 oil made most of my scars on my whole body fade about 90%. It truly works. I did have to use it for about a year, but very happy with the results. I did want to send you this link! I hope it will help soothe your knee. It was a life changer for me. I wouldn’t go anywhere without it.
I had a flare with my first vaccine, in hospital for a week (I always end up in hospital) however for my second my rheumatologist told me to up my steroids which I did and have had no flare. I have had covid which I had no issues at all.
I’ve had flare issues affecting my heart and am in hospital currently 12 weeks after the first AZ jab. Sorry you aren’t well. Please make sure you have your rheumatologist report this as not everyone flares but there is a working assumption that no one did in most of the studies.
Sorry to hear that you are in hospital with a bad flare. You’re right, these adverse reactions should be acknowledged. I hope you improve soon. Best wishes. Wendy
Yes, I had my first jab back in February and started to go downhill. I didn’t link it to my jab until much later.
I now realise that it kicked off a flare. I’m still coming out of it. I’ve had my second jab now too.
I run a support group and there are lots of others that have experienced the same and as soon as I came here I realised others had experienced flares after their jabs, in fact it seems very common amongst us autoimmune disease patients.
My fatigue has been crippling. At one point I was on the sofa for about 2 weeks and sleeping non-stop. Thank goodness my 3 children are older now and can take care of themselves and the dog!
Yesterday I fell asleep on the sofa for 3 hours and woke up at 6.30. I hadn’t even thought what I was going to cook. My malar rash came up and really burned my face.
Some of my flares are short and sharp, an odd few days of extreme fatigue etc and sometimes they are weeks/months.
I think this is one of the longest flares I’ve had for a while.
I really hope you start to improve soon. I’m afraid that there are times when you just have to give in to it and rest. Fighting it constantly just prolongs the flare, in my experience.
Yes, I have had flare ups since the vaccine. I received the Johnson & Johnson vaccine in March. I have been in a constant flare since receiving the shot. I had the initial tiredness and a headache, which wasn’t too bad, but the tiredness didn’t stop. Then my mouth had a flare of ulcers and my body went off to the races with pain all over - just throbbing constantly! My hands are still pulsing with pain - and it seems to come for no reason in my legs too. And weirdly enough, I had a period too and it had been some time since I have had one! My doctor increased my medication for the Lupus, which is helping so far. I have never felt quite this bad - constant flu feeling, pain, exhaustion, etc., and my entire life on hold again. A CDC rep left me a phone message, they want to talk to me. When you get the vaccine they send out update requests I have filled out diligently. My body does what my body does usually, and I have learned how to deal with this issue or that issue, but I am certainly overwhelmed with this! Hopefully, increasing my meds will keep the flare down and stop it from coming back. I never want to feel this way again!
I have found it very difficult to find info on the possible broader adverse affects. I had felt quite alone with what I have been through.
I'm new to the group and have not yet had my first rheumatology appointment so am not under treatment .
I had covid back in March 2020 and then long covid until November 2020.
I now think I have auto-immune disease. Renal pain, haematuria and high levels of leukocytes in my urine (clear renal ultrasound, and non contrast CT) prompted me to ask for an ANA test which was 1:320 speckled. Over the last few years I have also had sweats, aching glands, joints and various other symptoms - I think now I can recognise times of flare when I look back at my diaries.
This year, after covid last Spring, I have become photosensitive, had malar rash and dry mouth for the first time. These changes I noticed before my first AZ jab at the end of March.
Day 1 and 2 after the jab I only had the mild reaction, affecting the injection site and nearby glands. Day 3 one knee swelled up noticeably - going down the next day.
Feeling all was okay and I had got through it without bad side effects I celebrated. Having covid and long covid had made me more scared of having the jab.
However I then had an awful reaction starting Day 9. I took aspirin for severe headaches, particularly when leaning over or lying down. I also got shortness of breath on exertion. Day 18 I was feeling things had improved.
Platelets and blood clotting tests were normal when I had 'first blood test after the AZ jab' Day 21.
I had a aPL a few weeks ago that was negative, so I think it might have been a prolonged flare rather than a haematological problem (blood tests weren't 'at the time of the bad effects' though, so I'm not 100% sure ... )
I'm still getting bad headaches on and off, that last a few days
It has been a scary but I have found the aspirin helps all my other symptoms - so grateful I found this. Feel I now have a degree of control over what is happening, and proof there is inflammation maybe.
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