Re COVID-19 vaccine : Hi, I’m wondering what group... - LUPUS UK

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Re COVID-19 vaccine

elizabeth-57 profile image
23 Replies

Hi, I’m wondering what group I fall into regarding the COVID-19 vaccine. I am 63 and not sure if I fall into group 6 the 16-64 year olds with underlying health conditions. The only medication I take for lupus now are hydroxychloroqine (not sure if it’s the correct spelling, or if I fall into group 7, the over 60’s. Can anyone clarify this please, I’d be grateful, thank you

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elizabeth-57
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23 Replies
Spanielmadlady profile image
Spanielmadlady

Lupus puts you in group 6 .those of us on immunosuppressants (excluding hydroxchloroquine) are in group 4 x

Josiah150767 profile image
Josiah150767 in reply to Spanielmadlady

Hi SpanielmadladyI’m am about to start on methotrexate. Is that under group 6?

Spanielmadlady profile image
Spanielmadlady in reply to Josiah150767

Methotrexate put you into the shielding group as it's one of the chemotherapy immunosuppressant drugs the same as mmf ( which i take) and azathioprine so you should be in group 4 Jo xxx

Josiah150767 profile image
Josiah150767 in reply to Spanielmadlady

Hi thankyou. I had an app with the rheumatology nurse yesterday, finally after two cancelled appointments. I asked her advice as I moved to Gloucestershire just before lockdown and wasn’t registered with rheumatology and my concern was that I would be missed off the priority group. Her answer was, she didn’t know and I should contact my gp. My surgery has put out a message online that no one should contact the surgery regarding vaccines. So I don’t know what to do.I

Spanielmadlady profile image
Spanielmadlady in reply to Josiah150767

I'd of thought the hospital trust should know if they are prescribing the methotrexate x

Josiah150767 profile image
Josiah150767 in reply to Spanielmadlady

HiThat’s what I thought.

Spanielmadlady profile image
Spanielmadlady in reply to Josiah150767

I hope the methotrexate works for you 🤞 x

Josiah150767 profile image
Josiah150767 in reply to Spanielmadlady

Thank you and I hope so.

panther50 profile image
panther50 in reply to Josiah150767

I would recommend making an appointment with your GP to ask what group you've been put into. If it's Group 6 then they should be able to correct this to Group 4. I'm still having trouble because I have SLE on steroids and I've been put in group 9. Even though my consultant wrote to them asking to prioritise me and GP agrees it's wrong. She says the only flexibility GPs have is to move people to group 4! v frustrating. The receptionists were instructed not to let patients talk about COVID vaccine with the GPs but when I spoke to GP she was very happy to discuss it!

Josiah150767 profile image
Josiah150767 in reply to panther50

HiI was thinking of making an app for something else and thought I would mention it. I hope you manage to get things sorted out.

Spanielmadlady profile image
Spanielmadlady in reply to panther50

Lupus alone should put you into group 6 as it is an underlying health condition depending on your steroid dose you could be group 4

Jadelee28 profile image
Jadelee28 in reply to Josiah150767

I put it in writing to my Dr, within 45 mins of me hand delivering the letter I received a text to tell me I had been moved up to group 4.

elizabeth-57 profile image
elizabeth-57

Yes, my gp’s have put a message on Facebook regarding the vaccine asking not to contact them as they will contact people as and when each group is ready. I did message over messenger and was told they couldn’t tell me and it was on the computer system when my turn would be. I’d like to think I was group 6 but have a sneaky feeling somehow I’ll be group 7. I haven’t yet had a rheumatologist appointment at the hospital for a year now, am usually seen after about 9 months. I do appreciate they are busy and will be contacted when they are ready.

Spanielmadlady profile image
Spanielmadlady in reply to elizabeth-57

Lupus as an underlying health condition puts you into group 6 and some medications puts you into group 4

Natalia1 profile image
Natalia1

Hi, I'm on methotrexate and hydroxychloroquine and I'm in group 6. I'm not in shielding group as I'm only on one immunosupressant

smudge profile image
smudge in reply to Natalia1

Oh my understanding is if you are on immunosupressants you shield!!

Natalia1 profile image
Natalia1 in reply to smudge

According to the rheumatology nurse, I do not have to shield because I am only on one immunosuppressant and I will not get a letter. During the first lockdown in March, I got a letter and I shield till August and no letter on second lockdown, no letter now. My employer expects a letter from me to let me work from home and since I don't have one, I have to work as normal. I also talked to GP but they can't help either🤷‍♀️

panther50 profile image
panther50

I don't know what group methotrexate puts you in there's a table for Rheumatologist's to help you know, but personally I would check. I understand why they're saying just trust the system we'll contact you, but the system can get it wrong. It has for me. I wouldn't have asked but the nurse told me when I had my flu jab. Having said that the GP said my records were the first she'd seen with the Group applied, where she could see it. So who knows? See this link lupusuk.org.uk/coronavirus/ at the bottom of the page is the table. At least this will help you know which group you should be in i.e. mod risk= 6

CSLO profile image
CSLO

It's a little ambiguous Elizabeth. Paul posted this info that includes a chart to enable you to work out which group you may be in. I take mycophenolate mofetil, hydroxy and have depo medrone jabs instead of taking steroids orally. The list suggests that I'll be in Group 6 as I don't take steroids daily. I think!!lupusuk.org.uk/coronavirus/

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

CSLO, thank you. That’s what I thought, that I would be possibly in group 6, just keeping my fingers crossed I am and not group 7.

HighMaintenance profile image
HighMaintenance

As others have said, lupus is group 6. However once you start taking methotrexate that puts you into group 4. Your rheumatologist will (should!) write to your GP copying you in to detail the new treat regimen. That way both the hospital and GP know your vulnerability has altered. I think the Department of Health & Social Care must also be made aware because that’s who many of the shielding letters come from in addition to your hospital and GP. Good luck with the methotrexate, I hope you find it helpful x

elizabeth-57 profile image
elizabeth-57

Thank you to everyone for your replies, it’s been very helpful, and I’m hoping fingers crossed that I am in group 6.

M0kers profile image
M0kers

I believe you are in the high risk group due to your underlying medical condition

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