Sheilding letter

[Jesse040501]

Hi all,

Can anyone advise if am entitled to receive the shielding letter as currently am not on any medication. I only take steroids when i get a flare up. But am just worried that if i catch this virus i might not survive it due to my weak immunity caused by lupus

Kind Regards

[MandieR]

Hi Jesse, I also have SLE amongst other things. I have not received my letter yet, but you can self register on the Gov.uk website and then they will tell you, or call or email your Dr surgery.

It can give you some bits of help if you do get registered.

Hope this helps xx

[Jesse040501 in reply to MandieR]

Many thanks

[sarahalice]

Hi Jesse.

I have received the letter as I'm on just about everything drugwise. The letter seems to suggest it's the medication that some lupies are on that puts them at high risk and not the lupus itself. My specialist rang my when this all blew up and suggested the same. She also said the data they are receiving from the badly hit counties suggests that lupies are no more likely to get it than others, or die from it. But it's also pretty obvious that no one, knows anything and

I would definitely register yourself, but also I hope its put your mind at ease a bit. Scary crazy times.

Take care and stay safe, Sarah x

[Jesse040501 in reply to sarahalice]

Many thanks

[KatieRL]

Hi Jess, I understood that GP’s were responsible for advising the Government of ‘vulnerable’ patients who in turn received the shielding letter. I’m an SLE patient who is shielding as I take immunosuppressants and have an transplant. However I think all SLE patients should take extra care at this time and look after themselves. Stay safe xx.

[Jesse040501 in reply to KatieRL]

Many thanks

[Shann07 in reply to Jesse040501]

Hi Jesse, I iniitially didnt receive a letter, as I recently came off immunosuppressants, but I take hydroxy etc. I queried with my GP why I wasnt getting a letter as I needed this to cover me isolating while off work. My GP contacted my Rheummy who advised I definately should receive the letter. So in some cases GP’s are matching a criteria off a very generalised list, and as lupus is not the same for everyone i.e some have

Mutiple organ involvement, like myself, these people might go overlooked. Im sure you know you dont need a letter to tell you to isolate and be extra careful, I needed this for work. It’s worth querying or contacting your Rheummy’s office or asking your GP to clarify this with your Rheummy if you are in the same position, I wasnt receiving the letter until I questioned why x.

[Jesse040501 in reply to Shann07]

Many thanks for ur response

[lupie-Cathy]

Hi I found a list online ( can’t remember where unfortunately) that gave points for medications. 0 if you are just on hydroxychloroquine 1. If you were just on low dose steroids and so on up to 3 on immunosuppressive drugs such as bellumab etc you were only classed as vulnerable if you were in the category above 2 if I remember rightly I know that as I am only on hydroxychloroquine I’m not eligible to register for being vulnerable. I’ll see if I can find the list again and post it if I can hope you stay safe and well

[lupie-Cathy in reply to lupie-Cathy]

england.nhs.uk/coronavirus/...

[Tazuk in reply to lupie-Cathy]

Hi,

Wish I’d read this earlier, both my daughter and I are on immunosuppressants, and she recently had COVID 19 symptoms for 10 days and didn't stop her immunotherapy, if I get unwell I will now! We both got our shielding letters, my daughter got hers the Monday after they were issued, she’s been really unwell, but has recovered now, no GP or specialist has contacted her which I feel is very poor, she has active IBD, anorexia and is Bipolar, although the council are in contact by phone weekly, she’s only just got priority slots for shopping too, but has received the Boris box as i registered her. TAZ

[Jesse040501 in reply to lupie-Cathy]

Many thanks

[tiredmum]

Hi there,

I am on immunosuppressants and steroids so score 4 points which means I am vulnerable, however I have not received my letter. I contacted my gp who told me they were not responsible for the letter and it was down to the government and that all it did was tell you how to shield which we all now know.

I think it would make sense for all Lupies to treat themselves as vulnerable for the next 12 weeks as the risk isn’t worth it.

[Jesse040501 in reply to tiredmum]

Many thanks

[Hamptons]

The shield letter is based on your medical need - this refers to medication that you take and health complications. Things that could complicate your ability to fight the virus If you look through previous posts there are copies of the rheumatology scale. I score 0 as I am only on hydroxychloroquine, I think methertrexate and aziporpine scored 1. If you take steroids for flares only I think you scored a 2. But, your GP or rheumatology nurse is the person to ask. They know your full medical history.

You do. We’d to be self isolating and keep social distances as yes you are still at risk.

[Jesse040501 in reply to Hamptons]

Thanks for ur response

[Poshcards]

I have loads of illnesses besides SLE, Asthma etc on methotrexate etc, I have not had this letter, so do not think you will get one x