Oxford vaccine: Hi, i have systemic lupus and I’m... - LUPUS UK

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Oxford vaccine

Rufioxox
Rufioxox

Hi, i have systemic lupus and I’m currently not on any medication or treatment I’m getting the Oxford vaccination next week and I just wondered if anybody else had the vaccine who is or isn’t on medication and what side effects you may of gotten xx

Hope you’re all staying well and safe :)

70 Replies

Hello, Im the same and had my jab 5 days ago. The evening of the jab (mon) I developed fever/shakes. On the Tues I awoke with joint pain and fatigue like I was having an attack. I spent the next day and night in bed. I was so unbelievably tired and heavy with a major headache but it’s Saturday now and I’m feeling much better. Just get lots of rest and paracetamol. It was a rough few days but I imagine far outweighed covid.

Rufioxox
Rufioxox in reply to Dot0

I’m so sorry you were going through that, I’m glad you’re starting to feel better now and thank you so much for responding and I hope you’re staying safe

Dot0
Dot0 in reply to Rufioxox

All of my symptoms are classed as regular side effects though so please don’t worry. What’s a few days sick in comparison to catching Covid? There are lots of others who’ve had no side effects so fingers crossed for you.

Rufioxox
Rufioxox in reply to Dot0

Yeah definitely! Fingers crossed

Bellissimo
Bellissimo in reply to Dot0

Sounds exactly what I’m experiencing just now, I had the vaccine on Friday

Dot0
Dot0 in reply to Bellissimo

I hope you feel better soon

jackieswiss
jackieswiss in reply to Dot0

Which vaccine did you have? I had the Oxford vaccine, and I hardly had any side effects apart from headache and mild fever.

Dot0
Dot0 in reply to jackieswiss

It was the Oxford one. Knocked me for six but much better now.

Hey, you okay?

Really? That’s good! Still waiting to be offered to have a vaccine?

After 24hrs all good 👍 xx

Thats good I’m pleased it went away ☺️ xx

Hi TitchysquigI have lupus, am immunosuppressed and received the Pfizer vaccine yesterday. I had the go ahead from my consultant who followed advice from British rheumatology that either/or vaccine can be had.

Someone else has posted that the Oxford vaccine is more beneficial for lupus patients but I haven’t read that anywhere. The updated advice from Paul Howard at lupus uk doesn’t refer to any particular vaccine being more suited than another.

Just thought it’s worth noting. Lots of people on the site who have received the Pfizer.

Should have said....Have received the Pfizer with differing side effects. So far, I seem to be ok 🤞

Rufioxox
Rufioxox in reply to Susieliz39

I’m glad you are okay! And that’s good that Pfizer and Oxford seem okay for lupus patients x

Hi Rufioxox, hope you're doing ok...just curious about your route to get the jab without being on meds? SLE without immunosuppression would land in Cohort 6 though it's up to doctors to decide I think...Paul updated the LUK guidance on 17th Feb to include the new Covid risk assessment - which now includes SLE!! After speaking to an expert, he said SLE seems to play a small part in the calculation. Stay safe xxx

Rufioxox
Rufioxox in reply to eekt

Well, I got a call the other day saying I am now eligible for the Oxford vaccine and I didn’t book it there and then because I wanted to speak to my rheumatologist etc I couldn’t get through but I managed to get through to a nurse who said there suggesting everyone under them to get the vaccination so I’m thinking off getting the vaccine, what do you mean when you say cohort 6? And to play a small part? Sorry I haven’t really spoken to any professionals for advice other then the nurse but she didn’t really ask my name or my situation nothing.. thank you hope you’re staying safe xxx

lauraclerma
lauraclerma in reply to eekt

I have SLE and I do not have now medication but I had a text last week offering me the vaccine and will have it tomorrow. I've been said that the program takes in consideration different levels of underlaying conditions plus age ranges. In my case mild lupus (still lupus) + 50 y.o. My friend also 50ish has diabetes and has been called this week too

eekt
eekt in reply to lauraclerma

Thanks Laura, that would be Group 6 then so the programme's a good bit further ahead than around here - Group 5 is to begin this week! xxx

Thanks Rufioxox, the vaccination priority list is broken down into cohorts, and those who are CEV due to the medications they're taking would fall into Cohort 4 (that's the government's term), whereas those on no meds or on HCQ only would probably fall into the sixth category, though that depends a bit on individuals doctor's interpretations

I replied to Paul's email on 17th as SLE is now included in the CEV calculation, but SLE alone (with no meds) seem to play a small part in it - Paul's reply:

*That's right. A diagnosis of SLE alone will not mean that you are categorised as "clinically extremely vulnerable" and added to the Shielded Patient List.

I've exchanged emails with Dr Megan Rutter this morning and she has tested the model on a few different "case studies" and it doesn't seem that SLE is very heavily weighted, meaning that by itself, it doesn't significantly increase your risk. As a result, we don't anticipate many people from our community will be added to the Shielded Patient List - although that stands to be seen.*

Just interested in how the vaccination priorities are playing out...I was diagnosed with SLE in 2015 (highly specific bloods and all) and I'm still struggling to get it added to the 'active problems' list in my medical records 🙄...so it's not jab envy or anything, I'm back of the queue whatever 🙃

Thanks for getting back, go for it and stay safe xxx

CSLO
CSLO in reply to eekt

eek, I too was wondering about this and whilst at my GPs I asked if I was recorded as being in Group 6. They'd made a mistake and hadn't recorded me in the group so it was changed immediately. I had the jab two days later.

The Public Health leaflet handed to me with the jab, specified that group 6 was adults under 65 with long term conditions and SLE was specifically mentioned on the list with RA and Psoriasis. There is no mention of having to be on any medications for these conditions to be within this group.

My area has been vaccinating Groups 5 and 6 together for the past few weeks but I think there is some variance around the UK. We were slow to start here but caught up rapidly.

I had the Pfizer jab and had absolutely no after effects aside from a slightly sore arm.

eekt
eekt in reply to CSLO

Thanks for that CSLO, Group 5 is kicking off here soon....oh isn't it funny you had a leaflet including SLE, but had to prompt your GPs! Stay safe! xxx

Rufioxox
Rufioxox in reply to CSLO

I’m glad you aren’t having no side effects and are staying safe :) xx

Rufioxox
Rufioxox in reply to eekt

Ah, I got you! Thank you for explaining that ☺️ I hope you get offered yours soon! Hope you’re staying safe xxx

eekt
eekt in reply to Rufioxox

Thank you!Finding it fairly easy to stay away from people 👍 xxx

I had the vaccine last Sunday morning, started to have a fever and shaking and upset stomach on the evening of the jab. It lasted around 8 hours, Took paracetamol and pepto bismol and was fine the following day. Zero arm discomfort and didnt even feel the needle. Side effects are tolerable and expected so don’t worry.

Rufioxox
Rufioxox in reply to Saffiere

I’m sorry you had those side effects, I’m glad your feeling fine now! Hope your staying safe and thank you so much for responding xx

I had the Astra Zeneca vaccine 24 hours ago and so far so good. No symptoms except for a headache but that may also have nothing to do with the vaccine.

Rufioxox
Rufioxox in reply to FGrant13

I’m glad you didn’t have any side effects, hope the headache settles down for you! Hope your staying safe and thank you for responding xx

Snap.....exactly the same vaccine headache for 24 hrs xxx

Hi Rufioxox

I had the oxford vaccine Fri and had no symptoms on day of jab. Next day however was a different story. My body feels like it’s in a flare. I’m aching from head to toe and my joint pain is hard to handle.

I’m hoping it’s a side affect and will go in couple of days rather than full on flare. I’m just chucking pain killers and anti inflams at it at the moment.

As some other replies have said it’s prob not as bad as if I’d got covid itself.

Take care xx

Rufioxox
Rufioxox in reply to Hollydebs

I’m sorry your going through that right now :( I hope you feel better soon and the meds help, yeah maybe but it’s still not nice xx hope your staying safe and thank you for responding xx

Was jabbed yesterday and apart from mild aches so far so good.

Rufioxox
Rufioxox in reply to CBW54

I’m glad your not having any side effects apart from aches :) hope your staying safe and thank you for responding x

Hi Rufioxox,I had the Pfizer vaccine back in December (healthcare worker) and I was quite lucky- only an achey arm which is what happens with every flu vaccine, I've had perfectly healthy colleagues feel worse, but I've had some relatives who have autoimmune condition feeling exhausted for days. It seems to me the vaccine's side effects are pretty random to the individual, but generally most people are a bit tired and achey. I'm only on hydroxy however.

Rufioxox
Rufioxox in reply to AmyJ3

I’m glad you only had an achy arm, didn’t have any other side effects, oh god, really?? I hope there okay! Yeah I’ve read quite a bit of that tired and achey, thank you for responding! Hope your staying safe xx

Jhpc
Jhpc in reply to AmyJ3

I have mild lupus & rheumatoid arthritis, take one hydroxy, I had the Oxford vaccine last Monday, I had no side affects at all.

Rufioxox
Rufioxox in reply to Jhpc

I’m so glad you didn’t have no side effects! Hope your staying safe and thank you for responding! X

Jhpc
Jhpc in reply to Rufioxox

All good at the mo thank-you.

X

Rufioxox
Rufioxox in reply to Jhpc

I’m glad ! X

I have SLE and have had the Oxford jab. A slightly sore arm is the only reaction I have had. My haematologist reassured me it was perfectly safe.Good luck with your jab, I am sure, like me you will be so pleased just to get it. X

Rufioxox
Rufioxox in reply to Babsy2

Thank you so much! I really hope so I was so nervous for it but after reading all these comments I’m so much more at ease! I’m so glad you didn’t have any side effects! I hope your staying safe x

Hi I have SLE, had the Oxford 3 wks ago and just had an achy arm and a bit tired but that was it. I’m group 4 but not because of lupus, I’ve got no spleen which pushed me up.

I’m glad you didn’t have any side effects other then tired and achy, I’m sorry to hear that! I hope your staying well, thank you so much for responding x

Hi I had the Pfizer jab on Thursday. Apart from a sore arm and achy joints I'm fine.Glad you have a date for yours. Stay safe. X

Rufioxox
Rufioxox in reply to JCZW

Awe I’m glad your okay other then the side effects you’re experiencing I hope you feel better soon! Thank you!! Hope your staying safe x

Had mine 2 weeks ago arm still a little tender had the shivers for a couple of days, felt tired and achy but all good now. 2nd dose due in April so we’ll see what happens then only thing I will say is if you have a particular side you sleep on have the jab in the other arm.

Rufioxox
Rufioxox in reply to Bessy01

I’m sorry you went through those side effects, I hope the second dose goes better for you! Thank you for replying and I’ll definitely get that in the opposite arm! Hope your staying safe x

Hi, I had the Oxford vaccine on the 9th Feb, in the afternoon I had the shivers and a nagging headache which last for about 12hrs. Then I had muscle ache for about 3 days, then a 3 day itch. Side effects lasted about 8 days. Did feel really tired also.

Rufioxox
Rufioxox in reply to tit4tat

I’m sorry you had those kind of side effects, I’m glad your feeling better now ! Hope your staying safe and thank you for responding x

Hi I had the oxford vaccine, had joint pain, fatigue, headaches, after 2 days ended up with full flare and in hospital for a week. I was told that there is a suggestion that if you have had covid, which I have had with no complications, and then have the vaccine you will get a bigger reaction. Not too sure I'm having the 2nd dose yet.... I'm SLE Lupus on all the drugs and CEV.

Rufioxox
Rufioxox in reply to Teanau22

I had covid last March, oh okay thank you! I’m sorry that happened to you and I hope your okay! And staying safe, I don’t blame you! X thank you for responding x

Hi, I had mine 3 weeks ago and had a very sore arm for about 10 days and couldn’t sleep on that side for several nights. Absolutely fine now and hope you are feeling better.......it will pass. Just look at the benefits x

Rufioxox
Rufioxox in reply to Rolychip

I’m glad you were fine with the vaccine! I’m glad your arms feeling better to :) I definitely feel more reassured about the vaccine and I am less concerned now, yeah exactly! :) thank you so much for responding hope you are staying safe x

I had Pfizer and had no side effects at all. Not even a sore arm. I have Lupus and am on hydrocloraquine and cholchicine.

Canam11
Canam11 in reply to Dustydander

Is that two shots or one

Dustydander
Dustydander in reply to Canam11

Its 2 shots but I have not had #2 yet. Next week will be # 2

I got the Oxford vaccine on Friday morning, and I was very sleepy all day on Friday and nauseous. By Friday night I had flu aches and pains and very restless night. I’m starting to feel a little bit better this afternoon. I’m on mycrophenolate and steroids. I’ve done a lot of sleeping since Friday...I hope you are ok. Stay safe 🙂🙂

I have lupus and aps as well as chronic kidney disease. I had an Oxford vaccine yesterday morning and have been useless ever since... temperature, chills, aching all over, dizzy and finding it hard to stay awake. But honestly, it has to be better than covid! Short term pain, long term gain.

I had pfizer jab tuesday gone. Lupus flared up. All the symptoms of a full blown flare for took paracetamol and rested the headaches and fever started first. Still suffering the fever has gone but the pain of flare still ongoing guess itll take awhile. Tongue is still swollen. Hope it goes well for you lots of rest and pain killers will help 😴. Take care.

I had the Oxford one last Monday. Had a mild headache, some chills and a sore arm. My symptoms were really mild probably because I was on paracetamol for other issues. But I've been poorly recently so didn't feel much different.

Had the AZ vaccine a month ago -just a sore arm and severe haedache for 48 hrs, fine since. Just relieved to have some immunity -how much is not known my GP said, but any reduction in susceptibility to covid is welcome!

Hiya, go ahead with it. If you ask on a site like this you will always find differing experiences but don’t let any of them put you off. I’m due my second dose of the Pfizer vaccine in a few weeks and it can’t come quick enough. Take some Paracetamol and have a restful few days if you can. I’ve watched people die of Covid and believe you me I’d rather take some side effects to the vaccine any day of the week! Good luck with it x

Hi, I’m not on medication atm and had the Oxford vaccine last Monday. I was ill exactly 12 hours after receiving the vaccine and felt pretty poorly which lasted for a few days and the sore arm for a week but I was told it was my body doing what it should and I feel fine now. Try not to worry if you get bad symptoms, I panicked slightly and thought it was causing a flare, but it got better after several days. You’ll be fine and protected 😊

Hi, I have SLE plus many add ons and complications. I had the oxford vaccine 19 days ago. I only had some headache and slightly raised fever for a few days, and a mild arm ache. I would definitely recommend having the vaccine, and I feel far less panicky about catching it now that I have some antibodies against it. Best wishes.

I had the Oxford vaccine last Tuesday and 12 hours after I woke up with shakes, fever, sore muscles, headache just like everyone says. This lasted on and off for 3 days. Was treated well with paracetamol and are the exact same side effects my healthy friends had experienced too (care/nhs workers etc) and what the nurse tells you you can experience, so nothing out of the ordinary so far.

I had the AZ jab. No side effects at all.

Paul_Howard
Paul_HowardAdministrator

Hi Hidden,

Can you please confirm what you are basing your statement on? The JCVI does not advise a preference for either vaccine in any specific population so I believe that your statement is incorrect. We need to be very careful not to spread mis-information.

Paul_Howard
Paul_HowardAdministrator

Hi Hidden,

The vast majority of people who are vaccinated have no side effects or experience common, mild side effects for up to 24-48 hours. It is very rare to have a more significant reaction.

It is not possible to contract COVID-19 infection from the vaccination. You do not therefore develop a "mild form of COVID-19". For those who do experience side effects, it is often a sign that the immune system producing an effective response - that is why mild side effects are common.

Paul_Howard
Paul_HowardAdministrator

Hi Hidden. There is no clinical study at this time directly comparing the vaccines but both of those being administered in the UK at present have very good safety profiles. There have not been significant differences in side effect profiles reported for the vaccines so far.

I understand your concern about experiencing a flare of lupus symptoms following vaccination, but this remains rare. You also need to consider the risk of COVID-19 infection and what impact that could have if you do not have the protection that vaccination offers.

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