Hi all,
I have received an email from the NHS who are sending me free lateral flow tests, and say l may get anti virals should I get Covid.
Over on the Lupus forum, lots of people have received the same email and, like me, are wondering why since l am not on anything other than Plaquenil.
Anyone here received the same email? Can someone shed any light?
I received it as well. I thought it was odd because they have ignored me regarding covid since the start? I am on Hydroxychloroquine but no there immunosuppressant.
Yes, same here.
just had a thought - covid is now known to be a vascular disease. Maybe that's why we are being included?
Is this just happening in England? I'm in Scotland and haven't heard anything about it
not happening in Scotland for me? I’ve had no word from nhs about Covid or spring vaccine or anything Covid related since shielding stopped last year other than my winter vaccines.
Same here, heard nothing either. Thought we would've at least heard about the spring vaccine
I’m glad it’s not just me. We haven’t been getting much post lately and it often gets delivered to wrong addresses so I was wondering if a spring vaccine letter had been mislaid.
For my previous 2 vaccines I didn't receive a letter. I got an email followed by a text telling me my appointment date 🌹
ah right? I can’t recall. I think perhaps that’s how I heard too but maybe letter came too? Do you know if Scotland are still following NHS England on all Covid treatment related decisions? I guess maybe we will get notified a few weeks later as happened with winter vaccines I think?
No idea.🤔 You could ask on the Lupus community here on Healthunlocked; there are two threads about it and about 11 replies, so someone there may be from Scotland.
HI, I did not get an email, but I did receive Covid tests, even though I had not ordered them. There was no covering letter to explain anything. All a bit disjointed!
Same with me. I received an email and a couple of weeks later a box of covid tests arrived. Never received anything during covid. Can't understand why now suddenly. Oh well!!!!
Hi, I received this letter and latarol flow tests a couple of weeks again.I'm calling this the super special vuntable list 😁
is it genuine? Does it ask you to click ant links? Have you looked at the actual email address it has come from (rather than the alias/name it purports to come from) to check it is a genuine NHS one.
Strikes me as odd the NHS initial contact about something would be by email not letter.
I believe it is genuine.
Hi, yes...I've had the same and a box of tests arrived about a month ago. I'm only on hydroxycloroquine so it surprised me too !
yes I’ve had this too. Came via email but I presumed they have my details via the NHS ap. like many others I’m only on Hydroxycloroquine and have UCTD with scleroderma gut problems. I wondered if I received as I was told early in the pandemic to shield via Professor Denton due to severe gut problems but this was removed when they realised its lung problems which were more risky. Very odd but wondered if they are expecting a surge? You would have thought easier/cheaper to give us the spring booster as I’m not eligible (70 years old)!
I have received it too. Very reassuring.
I got one too for first time.
Great to be getting the free test kits, but not sure about the antiviral as issues with my kidneys.🙂
Yes I had this message too, and presumed it was because I was on the first CEV group although not on immunosuppressants. The antivirals seem to interact with several of the medications we may be on, so the decision to prescribe may be a finely balanced one.
Fortunately (in a way!) I am over 75 so will be eligible for the spring booster.
I have, but i am on a high dose of methotrexate x
yes I received one too and know I should have been on it from the start. Most people with systemic sclerosis have had the email about antivirals. It is a good thing really and may prevent us from suffering too much when we get it. Last time I got Covid I was hospitalised for a week. X
Just googled again and found this Gov.uk guidance page that was updated this week.
It says it only applies to people living in England and that here is separate guidance available for people living in Scotland, Wales and Northern Ireland.
COVID-19: guidance for people whose immune system means they are at higher risk
Updated 14 March 2023
gov.uk/government/publicati...
Seems now the following individuals now included whether or not on immunosuppressive drugs
- certain autoimmune or inflammatory conditions (such as rheumatoid arthritis or inflammatory bowel disease)
- inherited or acquired conditions affecting their immune system
I got my first free lateral flow test pack today
Good find, SC! I guess that explains it then. 😉
Hi there, Yes I had the email and box of tests through the post. Like others, I was surprised as I had no contact before, despite my lung issues, I now have UCTD diagnosis, so may be that was the trigger.
I have UCTD but my GP could not find this condition on the system used by the surgery.
Under problems, he had to select 'Connective Tissue Disorder'.
Lol! Uctd stands for undifferentiated connective tissue disease; it means you ha e a bit of one tbing and a bit of something else, so possibly a couple of symptoms of scleroderma, a couple of lupus type symptoms and several different antibodies. The following are all connective tissue diseases:Lupus, rheumatoid arthritis, scleroderma, and a couple of forms of vasculitis. Deep surgery, extreme stress and one or two other things can trigger the start of it.
Believe Mixed, MCTD is a mixture.
And that Undifferentiated UCTD is when no specific autoantibody has been found yet.
Could be early on or just that they have not tested enough.
Rheumy has said my symptoms are those of Lupus. I have noticed SSc symptoms too so think one day will be diagnosed MCTD.
Very complicated and even the professionals don't always agree.
First rheumy I saw said UCTD had its own specific antibody also.
So he did not diagnose anything, then second rheumy did diagnose UCTD.
Think there is a bit of confusion around and different advice is given out.
Yes I've received it.am on hydroxychloroquin, methotrexate,losartan etc etc.Perhaps it's more to do with our condition than medication
Hi, Blue_feather. I received a letter, too and a box of lateral flow tests. I'm on Hydroxychloroquine and Losartan and was on the original CEV list.
I think, like some folk on the Lupus forum (here on healthunlocked), l am wondering why now, and not back in 2020=21. Also wondering if it means l should not go to work if l get it and it is mild. I have come across a few colleagues who, in previous months, came into work with it.
I haven't had one recently but I have had that email in the past as I am on mycophenolate and a supply of LFTs for my use only .
Hi Blue Feather
I received a letter telling me I would be sent a supply of lateral flow tests. They arrived the following day. Instructions say to not use any other tests only the ones they supplied. There's also a phone no to ring should I need more. I wonder if they're expecting a resurgance of Covid this winter.
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