I am grateful to have received my first jab of the COVID vaccine on 2 Feb. As I have had an allergic reaction to Rituximab and some other drug allergies my rheumatologist recommended I get the AstraZeneca/Oxford one. I felt fine straight after but the after 36 hours I developed first a racing heart (which eventually slowed again right before I was going call 111), multiple swollen lymph nodes and a mouth full of mouth ulcers.
I have reported these to Yellow card site but was curious if anyone else in this group has seen this. I have lupus and am on prednisolone, Rituximab and Mycophenoloate plus hydroxycloriquine. Thank you for the feedback.
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ShannonB
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Good morning I’m glad I’ve read your reply as literally just had my vaccine and it was the Oxford one. Reading the previous one it frightened me but glad I read others so reassured more now. Thank you.
Thanks for posting, Shannon...am having my first vacc this afternoon & getting ready for however I react. ...all these months, have been following news re reactions with my fingers crossed...basically, I’m anticipating the sort of reaction you’ve described. Who knows why, but somehow I cope better when am not feeling ‘alone’ & I’d not even thought about reporting any reaction I do have, so you’re helping me a lot...I have a long list of allergies & adverse reaction to meds ...and am on long term daily hydroxy, pred, myco, IVIG (SCIG now during COVID) & various other meds: adding vaccines to this mix gives me the creeps, but my immunology team are urging me to get vaccinated, even though my Primary Immunodeficiency Disease means I can’t make antibodies in response to anything.
Well, as far as I know, I’ve never had an adverse vacc reaction since getting onto my current combined therapeutic meds, so 🤷🏼♀️...but I’m frail, my immune dysfunction is very early onset & advanced & am 67
Am very much hoping your vacc reaction settles down soon. It’d be great if you felt well enough to keep us posted
Ah, Mr C started to feel very unwell that evening and was in bed until the afternoon of the night day. Splitting headache, couldn't sleep, very lethargic/limp, odd colour, off food, etc. Then it suddenly lifted and now he's fine.As I hope you are, too!
Poor Mr C 🤦🏼♀️...but, YAAAAY👏👏👏👏glad he’s bounced back...am ok, thanks, but needing longer afternoon naps than usual...am distracted by Beast from the East 2: totally snowed in, had to cancel & reschedule this week’s 2 Hosp appts due to this weather...🤷🏼♀️ ❤️🍀
Thank you for sharing this. I’m anxious to get mine but I have to wait a while because I just had my infusion. Your treatment other than prednisone is the same as mine. I also had a full body hive covered reaction to Rituximab and do not get the flu shot because of an adverse localized reaction.
I’m sorry I can’t give you any feedback on your current reaction but I’m thankful you asked the question and hope you share what you learn once you have some answers.
Hi ShannonB, I have UCTD along with a vascular condition called Giant Cell Arteritis. I am on Pred, Tocilizumab and Hydroxychloroquine. I too, am relieved to have received the vaccine and I did have a reaction to it. Within 10 minutes of the jab, my face and tongue swelled, racing heart beat, high BP and rash from neck to tummy. Called 111 and they recommended anti-histamine, plenty of fluids and rest. Symptoms have abated, my face is a bit puffy still and I’m being monitored by GP (who completed the Yellow Card) and Rheumy knows about it. Hope you are feeling ok now xx
It was the Oxford/AZ vaccine - so I “shouldn’t” have had a reaction....anyway, there is talk of me having the second dose in a clinical setting next time, if they feel it’s appropriate for me to have it.
Hope you’re feeling more ‘normal’ this morning? 🤷🏼♀️ I slept as usual...feeling same as usual this morning...watching & waiting...maybe the few t-cell I’ve still got are ‘waking up’ ...🍀❤️
Yes feeling more “normal” now - how unique each of our “normalities” are! Thank you for your kind thoughts Coco! Hope the t-cells wake up steadily, behave themselves and that you are wafted gently through the next few days on a kind, light breeze. 🙏👍🍀😘
Omg I am so sorry about your adverse reaction. I am pleased that you are feeling much better now but it must have been so scary for you lovely. Huge Cwtches xxx
Thanks CP - I was a bit surprised as the only thing I am allergic to is penicillin! It was a bit scary tbh, but the great support I received from the NHS really helped the situation. All fine now, just chilling! 😃👍🤗😘🤗
Sorry to hear you have had a reaction, I had the Oxford Jab yesterday this morning I have a very sore arm, splitting headache and joints are hurting. Hopefully will all go soon. Let's hope you are feeling much better today xx
I was exactly the same especially where your foot bends near the ankle joint! Both sides were incredibly painful. My elbows joints, and hips! Nausea, and the worst headache ever. But the strangest thing happened was I had an thirst on me that I couldn’t stop no matter how much I drank. Not looking forward to the my next one. Although I had these side effects the doctor who administered mine ( Astra-veneca) said, side effects are good because it means your immune system is recognising something different and working to fight it. ( not sure how true that was?)
Thanks everyone - hope you all feel ok post jab. I’m still really struggling with swollen lymph nodes and mouth ulcers but I guess they say symptoms can last a week so maybe that’s expected. It doesn’t seem to be getting worse. Thank you all for taking the time to reply and all the kind messages. I guess the good news is that there doesn’t seem to be a particular pattern for all of us.
I’ll post another comment if things aren’t improved in the next day or so and let you know if I learn anything. ❤️
Yes do keep us posted - and as you say, there seems to be no particular pattern, which in some respects can be reassuring?! I hope your symptoms settle, I now feel back to normal after a week. 🤞😘
Sorry to hear about your reaction Shannon but hopefully everything will calm down. Had my first one yesterday (Oxford) and apart from a sore arm I’m ok at the moment. My lupus is mild and I’m on hydroxycloroquine too. I wish you well xx
Sorry to hear about that. I had the Oxford vaccine too but just felt a bit nauseous and had a stonking headache for a couple of days but that was it. I hope you're feeling better now.
I’m on the RA site......on Rtx infusions...no Mtx or steroids.I had the AZ vaccination two weeks ago ...36 hours after the vaccination I was dizzy, nauseous, headache & tummy upset....and I’m only 50% recovered now......but GP & 111..not at all interested ...& no useful advice offered.
Has anyone who has had a nasty reaction had any answers as to whether one should have the second jab?
Unless I do get any clinical advice to the alternative I intend to have it
Hi I have been experiencing a racing heart since having the Pfizer vaccine, was not sure if I should inform my GP but going to now thank you for sharing
I’m quite relieved to read this thread as I have only heard people saying they were absolutely fine after the vaccine and I was thinking I can’t be the only one who isn’t...!
I am still pleased that I’ve had the vaccine as I think covid could be dangerous for any of us with autoimmune conditions on immunosuppressants. I have UCTD and I take methotrexate. I feel fortunate that I have some protection against covid now but I will have to check with my Rheumatologist if I can have the next one.
I had the Pfizer vaccine 2 weeks ago. I initially had the normal side effects- I felt a bit sleepy for a few days. Then about 6 days after the vaccine I woke up with very swollen glands and I felt achy all over. I had a covid test but it was negative. My glands have started to go down but some of my UCTD symptoms are flaring up- joint pain, fatigue and dry mouth. I am still hoping the symptoms will fade but I’m going to ring my rheumatology nurse tomorrow (if I can get through!).
I’d still recommend having the vaccine but check with your consultant beforehand. Im hoping there will be more data soon about which vaccine is the safest for those of us with Lupus or UCTD to have.
Thanks Shannon.My Rheumatologist replied to my email today and said it’s likely that I am having a flare up triggered by the vaccine. He said this can happen with any vaccine when you have an autoimmune condition although it is not the norm. I am having a steroid injection later in the week to hopefully settle my symptoms. I am waiting for advice as to what to do about the second vaccine.
I hope this information doesn’t put anyone off- I thought it was important to share but I do think that I have just been unlucky! I had been reducing the dose of my methotrexate so the 2 things together may have just been too much for my immune system to handle!
That makes total sense and it is what I think is going on with me too. I have gone backwards and took today off work because I was feeling so rough. Bit better from from rest but glands are still swollen and still have tons of mouth ulcers. Still feel quite rundown. I agree I don’t want to put peeled off the vaccine. It seems most people are handling it quite well and my rheumatologist said he hasn’t had many calls at all with issues from it. I hope the injection helps you. Thx for sharing.
Sorry to here about your experience. I too know first hand about terrible side effects from vaccinations. I won’t be getting a Covid vaccine due to seizures I had with other vaccines in the past. They are nothing but poison so why would anyone get them. All the best 💓
Had my AZ vaccine just over 2 weeks ago. Apart from a sore arm I just had a really terrible headache for 48 hours, all of which are listed as v common in general.population having the vaccine. Been fine since. I just have prednisolone and hydroxy now. Stopped mtx a couple of years ago. Hope you are feeling ok now.
I am on almost exactly the same medication profile as you! Prednisolone, Myco, Hydrox, and Rituximab (plus some others but they’re the main ones). I also had an allergic reaction to Rituximab so have to do the slow drip every time. The side effects I’ve had have been headache, aching all over, and tiredness.
Like you, I’m grateful for the vaccine but I’m anxious for more answers when they’re available.
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