NHS letter : Morning everybody hope you are all... - LUPUS UK

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NHS letter

svfarmer profile image
16 Replies

Morning everybody hope you are all doing ok😊

I’ve eventually had a letter from the NHS dated 29th April saying they do not believe I’m part of the group who needs to shield - I’m very confused as I have Lupus and am taking Methotrexate so believe that I’m at risk - I will have to wait until Tuesday now to give my surgery a ring and ask them why I’m not at risk 😖

The only things keeping me sane at the moment is Bea and her puppies 🐶- I will post more cute puppy pictures tomorrow 🐶😍

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svfarmer profile image
svfarmer
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16 Replies
PMRpro profile image
PMRpro

Er - Monday isn't the Bank Holiday! Last year, Theresa May moved it to Friday for VE Day

bbc.com/news/uk-48565417

Since she waited to annouce it until after all the 2020 calendars were already printed and on sale, most of them don't show it!

Not that it makes any difference in todays Covid-world, there were a lot of very annoyed people who had arranged their weddings for the long weekend!

Horsewhisper profile image
Horsewhisper

How confusing and not nice to have the uncertainty too. Yes a call to the surgery will clarify things and in the meantime you have your gorgeous Bea and her beautiful puppies to keep you going! All the best 🐾🐶💐xx

Tykle profile image
Tykle

No one knows you better than yourself so do what you think is the right thing to stay safe.

Cathyan profile image
Cathyan

Hi svfarmer. The guidelines say you need to be on prednisolone 5mg or greater for at least the 4 previous weeks in additional to methotrexate in order to be on the shielding list. See here (I hope) rheumatology.org.uk/Portals...

svfarmer profile image
svfarmer in reply to Cathyan

Thankyou so much for sending me that chart 😀 things are a little clearer now x

Jesse040501 profile image
Jesse040501

Sorry to hear this. Its probably best to give your GP a call to verify. Did you receive a letter to shield in the first place??

svfarmer profile image
svfarmer in reply to Jesse040501

Thanks for reply no this is the only letter I’ve received from the NHS x

Sara_A profile image
Sara_A

Yes I think according to the chart and scoring system being on mtx alone doesn't put u into the shielding category. Being on one immunosuppressant doesn't give u enough 'points' as it were unfortunately which seems silly!

Blessyou profile image
Blessyou

Hi Ya , i have Lupus too.I called my Drs because i am not classed as at risk. They said i am in a grey area because i am on Hydroxychloroquine so I am staying in lock down . Hope this helps you . From Karen Stay safe and take care

svfarmer profile image
svfarmer in reply to Blessyou

Thankyou for your reply x

Sara_A profile image
Sara_A in reply to Blessyou

Yeah I think if u are able to and u dont HAVE to go to work then definitely stay home and shield. Hydroxychloroquine wasnt on the chart as a shielding category no but I'd still be v careful and stay home if poss.

I'm on mtx and long term daily steroids so did fit into shielding so unfortunately have to shield and also unfortunately have had to probably rather dangerously at this point had to have both of these doses increased! Not great timing, thankfully my partner who is also a medical key worker like myself has been given furlough because of me being high risk by his well known company on full pay!!! I'm not even on full pay from my company ha!!

Take care x

svfarmer profile image
svfarmer in reply to Sara_A

Thankyou for your reply and best wishes x

Hatelupus profile image
Hatelupus

Hi everyone, I have lupus and I'm on hydroxychloroquine. According to the rheumatology guidelines it's strict social distancing as I don't score enough points for sheilding, however when I went to see my GP for a flare up of Raynaud's I was told I was to shield. A few days later a letter was sent by the GP to confirm this.

You can't put everyone in the same box. Lupus varies from one individual to another. I end up with severe flares after colds/ infections even though on paper my lupus seems controlled with hydroxychloroquine,I still end up on steroids and being bedridden for weeks in end.

Look after yourself, stay safe.

X

svfarmer profile image
svfarmer in reply to Hatelupus

Thankyou for your reply x

BACKSADLLE profile image
BACKSADLLE

It may be the dosage you are on. I am on the max 30 mil. That’s why I am at risk as it is auto-immune.

shaney2510 profile image
shaney2510

I have had the letter from NHS Saying I’m vulnerable and high risk but I had to ring my doctor who agreed that I was. I have now been furlough from work!

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