Lupus SLE on steroids, but in group 9 for COVID v... - LUPUS UK

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Lupus SLE on steroids, but in group 9 for COVID vaccination?

panther50
panther50

Hoping someone here can help me. I’m feeling really fed up! I’ve had SLE for 10 years, I’m on a v low dose of prednisone (& have been for 10 years). Fortunately my Lupus is generally well managed, although I also have hypertension. I wasn’t in the shielding group as I think I fell just outside the criteria. However, I was having my flu jab before Xmas & was astonished to hear that I’m in group 9 (i.e. no health condition) for COVID vaccine. I’ve tried to raise this with my GP practice but feel I’m banging my head against a brick wall! Not allowed to talk to their GPs about it & the manager implied I was trying to jump queue. I thought systemic lupus was recognised by the government as a health condition that is eligible for group 6 (like diabetes)? My rheumatologist had even written to them. Can anyone shed any light or suggest where I go from here. Feeling very unsupported by GP. I realise they’re under a lot of pressure. Does anyone know who decides who goes in which group? It sounded like they couldn’t be changed & the lists was generated by the government.

24 Replies

I think it's the medication that determines where you are in the queue.....I lung involvement and im on a higher dose of prednisone as well as mmf so im clinically extremely vunerable and im 4th in the queue.its also to do with the amount of prednisolone you take.20 mgs or more puts you in a higher category

Yes to be clear. I don’t think I should be 4th in the queue (the clinically extremely vulnerable), but I do think I should be in the category for those with health conditions like diabetes (which is 6th). That group isn’t determined by medication & Lupus is listed amongst those health conditions that qualify. At the moment I’m due to get the vaccine last, months later. I fear i’ll be left at risk as regulations relax.

Sorry I wasnt implying you were.things may change as they get the most vunerable vaccinated and things settle down into more of a routine.i cant see things been relaxed next month so fingers crossed you get the vaccine x

No that’s ok. I hope so too. I might try speaking to the GP. They usually listen to the Rheumatologist.

Stay safe and warm xx

You too. xx

Hidden
Hidden

I think you need to register/re-register all your diagnoses and all your current medications on the Government’s latest priority groups for Covid-19 variant vulnerabilities and vaccination. Those designated as “extremely clinically vulnerable to COVID-19 have got emailed letters today”.

Others perhaps later but when it comes to being vaccinated, I’m personally not so sure about which one?

All the vaccines available differ in terms of % efficiency and effectiveness. Even going out and getting a jab puts me off.

GP practices haven’t kept pace with the latest guidance and generally accept the “higher” authority of central government.

So don’t get disheartened until you actually get the changes you expect and want from the Government. The guidance is based on diagnosis, current medication, dosages...but who knows when it will change???

Keep shielding, keep safe and take care!

Hello, SLE is named as a condition that falls into the group 6 category, basically anyone who has a flu jab offered to them. It is named in the “green book” which is what is sent to GPs to specify who falls into each category. If I You should maybe suggest that you’re surgery consult the green book and they will see SLE as a named condition for group 6.

Link below

Wishie
Wishie in reply to Wishie

It’s on page 10, chapter 14a

I hope that helps.

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Willow1414
Willow1414 in reply to Wishie

Thank you for this information

🦋❤️

smudge
smudge in reply to Wishie

I don't even get called in for a flu jab at my surgery so this time I haven't bothered, I'm fed up with the stress of chasing it up every year as well as medicatios throughout the year!It amazes me just how different it is everywhere when they should all be following the same criteria but I guess it's a bit of a post code lottery scenario and depends where you are as to what you get!!

My rheumatologist told them that. I referred to it in my letter (email) of complaint, but just got a curt email back from the manager (not medically qualified) not even addressed to me, implying I wanted to jump the queue. This actually reduced me to tears. It feels like everything’s a battle. I’m wondering if the even have me down with SLE now. Zoe896 how do I register or re-register those things? Is that GP or some central website? I’m speaking to GP shortly. I’ll let you know how I get on.

Spoken to a very nice GP. She’s going to look into it and get back to me. Fingers crossed I can get it resolved.

Jumper99
Jumper99 in reply to panther50

I hope they sort it out now. Sounds like a blunder by your GP surgery. X

Paul_Howard
Paul_HowardAdministrator

Hi panther50,This government article specifically states 'lupus' as one of the conditions that are a priority for vaccination in adults - gov.uk/government/publicati...

Just a quick question on this. Would people get the call for the Jab from their consultant via GP, or just from the GP surgery. I ask this because SLE has different involvement for everyone and as someone said, it also depends what medication you're on. Lupus is very complex and I would feel safer if you were individually assessed to have the jab via your consultant, rather than just put in a vunerable category and given an random appointment.

Paul_Howard
Paul_HowardAdministrator in reply to awareness75

Hi awareness75. It isn't entirely clear how this is going to be done at this stage. I would imagine it will be a similar process to the flu vaccination campaign and shielding letters, but there are different groups this time around. As we learn more, we'll update our guidance.

Wishie
Wishie in reply to Paul_Howard

I just looked at that and there seems to be a caviat line at the bottom, saying whether you’re offered the vaccine depends on the severity of you’re illness 😑 I understand that for some conditions however, this makes me nervous as lupus is unpredictable as we all know, so who decides if you’re well enough to not have it and on what evidence?

Paul_Howard
Paul_HowardAdministrator in reply to Wishie

Hi Wishie,We expect everyone with lupus to be offered the vaccine because it has been listed as one of the priority groups for vaccination. The list for vaccination, I believe, will be generated through a combination of NHS coding and GP's putting patients forward. We are concerned that some people will fall through the cracks. When we hear that a lot of people with lupus are starting to receive their invitations for vaccination, we will share about it and update our guidance with recommendations if you haven't been invited.

Wishie
Wishie in reply to Paul_Howard

Thank you very much for info.

awareness75
awareness75 in reply to Wishie

Maybe it could be whether your Lupus is skin or systemic and what organs are effective. For me personally, it effects my heart and lungs, for some, it's their kidneys. As the virus effects the respiratory system, that concerns me a lot. That said, my brother in law passed away with covid, due to his kidney disease, so we just hope that there's more specific data coming to light asap for people in our category.

Wishie
Wishie in reply to awareness75

I have SLE - sorry about you’re brother in law. Stay safe

Thanks and stay safe too🙂

Just an update to my post. Hope this is helpful for others. My GP was able to change my group from 9 to group 6 in the end which is what it should have been automatically.

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