Lupus & COVID-19 Vaccination - UPDATED 12/01/2021 - LUPUS UK


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Lupus & COVID-19 Vaccination - UPDATED 12/01/2021

Paul_Howard profile image
34 Replies

Hi everyone

We've updated our information and guidance about lupus and COVID-19 vaccination -

In the past week there has been some confusion and misinformation regarding the Oxford/AstraZeneca vaccine. This was especially the case following Prof David Salisbury's interview on BBC News.

We have sought advice from clinicians and professional bodies, including the British Society for Rheumatology (BSR) and have been assured that the Oxford/AstraZeneca vaccine is considered safe for people who are immunosuppressed.

The Oxford/AstraZeneca vaccine is not strictly considered to be a ‘live’ vaccine although it does contain a live, non-replicating adenovirus vector. Adenovirus vector vaccines have been trialled in populations with high prevalence of HIV and shown no serious adverse events. It cannot replicate in humans and does not make more virions, and therefore it is perfectly safe in the immunocompromised.

We hope that this will provide some additional reassurance for you.

34 Replies
Oshgosh profile image

Thank you

happytulip profile image

Thank you Paul.

Spanielmadlady profile image

I hope this lays to rest some of the drama surrounding vaccinations and people can now simply be patient

Ieuann133 profile image

Thank you Paul, that is really reassuring.

Willow1414 profile image

Thank you Paul , much appreciated .


Cathyan profile image

Thanks Paul, that's very helpful.

Princerogers777 profile image

Thank you!!!

Ncut profile image

Thank you Paul that is very reassuring.

Krazykat26 profile image

Thank u Paul 🌈😽😽xx

Lurpack-2016 profile image

Thank you Paul.

CecilyParsley profile image

Thank you so much Paul

Tonk profile image

Thank you Paul and your team.We are blessed having such a caring and diligent group of people to cut through the soft stuff and provide us with actual facts.

Again many thanks.

Thank you Paul for making time to send out this very useful information. It makes good reading and explains everything so well.

rosebud52 profile image

Thank you Paul, i feel more assured now.

helsbels31 profile image

Thank Paul, that’s so reassuring x

loopy-lou profile image

Thank you so much!

MrsMouseSJ profile image

Thanks so much for clarifying this, Paul.

Whippet_lady profile image

Thanks Paul.

Spotty-ewe profile image

Good to know. Many thanks Paul.

patientpat profile image

Good morning Paul and thank you for the latest information about the Vaccine.My question is not about the issue of it's possible effects on immunosupressed patients but on those like myself who have an 'overeactive' immune system because of in my case, several autoimmune disorders. Does anyone know whether the Vaccine could trigger more over reaction in people like myself. ?Thanks

Larks0ng profile image
Larks0ng in reply to patientpat

Hello patientpat, At last someone in the same boat as me! I wrote to the rheumatologist I see for my SLE, but all I got was

"We have no reports of Cytokine storms in lupus patients, or indeed any patients, receiving the vaccines. They have now been given to over two million people in the UK so I think it is safe to assume that this is not a reaction that we will see.

You are right that the AstraZeneca vaccine is 'live' , however the live component is a modified adenovirus vector which has been modified so it cannot replicate in humans. The Covid component of the vaccine is not live. It is therefore safe in immune-compromised patients. I hope this is helpful for you."

I understand that Cytokine storm describes the reaction you and I get when we have a lupus flare - where our overactive immune system goes into overdrive. I don't know if this gives you any reassurance. I'm not sure it reassures me entirely.

patientpat profile image
patientpat in reply to Larks0ng

Hello LarksOng,

Thank you for your reply and clarifying issue with the Astrazenica Vaccine. As regards possible complications for people for people like ourselves i suspect that what you have said is going to be the 'standard' explanation because i think they dont really know. I am still very worried because i have several diagnosed autoimmune disorders, including Antiphospholipid Syndrome.

However, the balance of risk has to be weighed up agaisnt contracting Covid and the possible catastrophic effect this disease could have on us.

Paul_Howard profile image
Paul_HowardPartner in reply to patientpat

Hi patientpat ,

The vast majority of the trials for the vaccines so far have been in healthy people, which means that we don't have a thorough understanding of the possible effects the vaccines could have in people with autoimmune conditions. However, as Larks0ng has said, millions of people in the UK have had their first dose of the vaccine now and this includes a number of healthcare workers and older people with conditions such as lupus. So far, no serious adverse effects of the vaccines have been reported in patients with autoimmune conditions - which is great news.

ClaireCo83 profile image

Hi, I am a 37 year old mother of two, I work in Health and Social Care sector in Northern Ireland and I have SLE. I received my first dose of the Pfizer vaccine on the 20th December 2020 and received my second dose on Sunday 10th January 2021 (21days later) and thought you might like to know my experience. First dose was fine, nothing but a sslight headache and a sore heavy arm where the injection site was, the second vaccination has been very different with a head ache starting approx. 6-10hours afterwards that continuously got worse over night. On Monday 11th January I felt aches and pains all over, the headache continued throughout the day, by the evening of 11th I had a raised temperature of 37.7-37.9°C, this would not go down with paracetamol but dropped slightly with ibuprofen but only for a short period of time. Throughout the night of the 11th my temperature remained raised and I experienced chills and cold sweats continuously throughout the night, my bed clothes were saturated. I also experienced very itchy palms of my hands and feet and a few hives on my arm. The next day I could not attend work and slept on and off most of day only wakening to take painkillers or to change saturated bedclothes. This went on last nite too, however my temperature has came down today (13th January) but I am still very sore all over, very lethargic and still have a sore head. The sweating continues but my temperature is down thankfully. My colleagues who do not have SLE experienced similar symptoms but only for 24hours after their second dose; I am the only one out of a cohert of 26 people that side effects were so severe and have continued for so long so I assume its due to my condition. Despite this, a few bad days is nothing compared to what the consequences of contracting covid-19 could potentially have. I don't regret it at all and feel very privileged to have received it. I hope that you all are able to get either vaccine that is available as soon as possible. Take care & keep safe, Claire.

Mancoca profile image
Mancoca in reply to ClaireCo83

Hi Claire, Thank You so much for sharing your first hand experience ass it is very help!Hope you feel all better soon.

K 🤗

amwas profile image
amwas in reply to Mancoca

Thank you so Much for your information. It’s really helping me prepare. I had the covid virus in November and was fine but the side effects after a month starting Christmas night, were dreadful and triggered a flare. I get my vaccine this Tuesday and am more prepared for after effects having checked with Lupus Uk for advice. It’s better to be vaccinated than have the actual virus. 😊Take care

Susieliz39 profile image

Thank you for the clarification Paul. Sue

panther50 profile image

I’m am really struggling here. When I had my flu jab I was told I was in group 9. My consultant has advised that there’s no question that Lupus falls into the category of an at risk condition for COVID vaccine (as you said in reply to original my post). This isn’t dependent on treatment (treatment only decides whether you are shielding group 4 or in group 6). Anyone with Lupus is either group 4 or group 6. She wrote to my GP who agrees but she’s told me the only flexibility they have on their system is to move people to the shielding group (which I’m not- Presumably this was allowed after the errors on shielding in March). She says wants to help me, but it seems GPs can’t correct any group 6 errors on the system. Paul do you have any idea where I can go with this? I won’t be the only person who’s been accidentally assigned the wrong group by the automated system & most people in group 6 won’t know if they’ve been put in the wrong group yet. Surely the government allowed GPs to override the automated system using clinical judgment? Is my GP right? She checked and I was coded for systemic lupus on the system, yet still group 9.

Susieliz39 profile image

Hi Panther50

If you take a look at Public Health England green book, chapter 14a, page 9 it states that ‘ a gp or hospital clinician can add a patient to a group if their clinical judgement is that they are in a higher group risk’.

My interpretation is that this could be applied to you but that only my opinion.

Hope this helps a little.

Sue x

panther50 profile image
panther50 in reply to Susieliz39

Thanks Sue for taking time to reply. My rheumatologist referred to this Green book & wrote to GP asking me to be prioritised. The GP seems to agree but had no way in the database of changing my group. The only the control she had was to put people into shielding group 4. She was v kind & trying to help me, but so far has been unable to . V frustrating- Computer says no!🤦‍♀️

Susieliz39 profile image

Hopefully, this is the link!

panther50 profile image

My GP has now corrected my group. Very relieved and grateful for her persistence.

Paul_Howard profile image
Paul_HowardPartner in reply to panther50

That's great to hear. Thanks for updating us.

Largather profile image

Hi. I have SLE with nephritis and neuro complications Had the Pfizer vaccine 9 days ago. 30 mins after got left side numb tongue and jaw. Went off after couple of hours. Few hours later flank pain and bad cystitis started. By day 5 progressed to sore spine , lower back pain and stiff muscle. Gradually built to lupus flare up. Feeling terrible now. Started antibiotics for the kidneys and aspirin for the blood. But my hips are in and out of spasm. Waiting for it all to ease as bit. Having my bloods checked tomorrow. All treatment by my gp. I'm shocked by my reaction. I was feeling ok and on hydroxy and tolersating it. Has anyone had such a reaction to the Pfizer. Dont know if I was maybe starting a flare before it. I'd been on antibiotics for a chest thing , not covid 1 week before the vaccination

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