Lupus & COVID-19 Vaccination - UPDATED 03/02/2021 - LUPUS UK


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Lupus & COVID-19 Vaccination - UPDATED 03/02/2021

Paul_Howard profile image
15 Replies

Hi everyone,

We have updated our information and guidance about lupus and COVID19 vaccination:

The latest update has added:

• Guidance for people experiencing a lupus flare

• Guidance for people due to start immunosuppressive therapy

• Guidance for people on anticoagulation therapy

• Expanded information about vaccine safety

• Updated guidance for people with a history of severe allergic reaction

I want to add that it is great to see so many people within this community having their first vaccine dose and sharing their experiences for others. Thank you all for sharing. I understand that some people have strong views about the vaccination rollout and I'd like to remind everyone to ensure they keep discussions polite, respectful and supportive.

I am monitoring the forum for comments/posts that are inaccurate/misleading and will take steps to remove them. Please bear in mind that we are only a small team, currently under increased pressure. You can help us a lot by using the 'report' function to flag any concerning comments to us.

15 Replies
ExtremeDuvetDaze profile image

Thanks for sharing this info, I’m very pleased to say that I had mine on Sunday and apart from a sore arm for two days I’ve not had any other side effects so far 🤞. Diane 🌺

ShannonB profile image
ShannonB in reply to ExtremeDuvetDaze

I had mine yesterday and same - bit achy this morning and otherwise fine!

Cruising2020 profile image

Thank you so much for the update - very informative. I’m having my first dose on Saturday, so am a bit anxious, but not feeling as bad after reading the report. Thank you -Sue

Horsewhisper profile image

Thanks for posting this Paul - really informative, especially the link to The Green Book, stacks of useful stuff in there 👍

Jodipat77 profile image

Does anyone know what the advice is for shielding children with Lupus and the vaccine? Thank you

Paul_Howard profile image
Paul_HowardPartner in reply to Jodipat77

Hi Jodipat77 ,

The vaccines being used in the UK are not currently approved for use in children. The Pfizer/BioNTech vaccine is for 16+ and the Oxford/AstraZeneca and Moderna vaccines are for 18+. I understand that they are now being trialled in children, but I don't know when they may be approved for use.

Most children who were previously advised to shield are no longer considered to be clinically extremely vulnerable. Your child's doctor should have been in touch to advise you about appropriate precautions last year -

Wiley1 profile image

Hi im new here, I’ve been trying to get some clarity on when I will receive the COVID vaccine- I thought I’d be in group six but after a chat with the receptionist at my gp surgery I was told I’m not on the list for group six- she was surprised by this and is going to look in to. I’ve seen from other posts there is a lot of confusion with some getting the vaccine (when on hydroxychloroqine only) and others being told no by their gp. I wondered if you knew anything more concrete. Thankyou

Paul_Howard profile image
Paul_HowardPartner in reply to Wiley1

Hi Wiley1 . If you have SLE, you should be in group 6 at least. Your GP should be able to add you to the group if you have been miscategorised.

Wiley1 profile image
Wiley1 in reply to Paul_Howard

Hi thank you so much for your reply. It turned out I was miscategorised and am now due to get my jab next Wednesday my gp also arranged for my (healthy) husband to be vaccinated at the same time as he felt this would be added protection for me (I have SLE and APS). This was a big relief and hopefully everyone else who’s had the same problem will be able to get theirs too- it’s definitely worth contacting your gp. Thanks again for replying

elizabeth-57 profile image
elizabeth-57 in reply to Wiley1


elizabeth-57 profile image
elizabeth-57 in reply to Paul_Howard

Hi Paul, my GP did add me to group 6 as on their records I was in group 7 and she thought by her reckoning I should be in group 6 or even 4. She sorted it and I got a call a few days after to go for the vaccine, then I got my NHS letter a few days later, obviously ignored it. Typical though that. I’m only on hydroxycloroquine medication as well as Wiley1 is. So hopefully she will get hers sorted too by the GP.

elizabeth-57 profile image
elizabeth-57 in reply to Wiley1

I had my first vaccine 3 weeks ago and am only on hydroxchloriqune medication. I messaged my drs as I hadn’t heard anything and I was told that I was on their records as group 7, but to her reckoning I should be in group 6 or even 4. She looked into it and I got a call a few days after to attend the same day for mine. What a relief it was too.

flo_IarFachYrHaf profile image

I don't know if I am eligible for underlying health condition or have to wait for my age group. I take hydroxychloroquine and can't work.

Some years ago my GP told me I should have the flu jab, but I still don't get a letter I phone and GP then confirms I am eligible.

I've had earlier diagnosis of Psoriasis too, which is on a list for underlying health conditions too - but does it depend on the treatment received?

I don't want to bother the GP surgery because they say don't phone, wait for invitation. I would prefer the vaccine at GP surgery because the vaccine centres are at a distance and I have to get my Pa to drive me.

Paul_Howard profile image
Paul_HowardPartner in reply to flo_IarFachYrHaf

Hi flo_IarFachYrHaf . Yes, you should be eligible as part of Group 6 regardless of treatment. I've actually just published an update to our article about this which discusses it further -

flo_IarFachYrHaf profile image
flo_IarFachYrHaf in reply to Paul_Howard

Thank you. I've just received an appointment for AstraZeneca, not at my local surgery, via my age group (55+) rather than health group!

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