Letter from government regarding staying home - LUPUS UK

LUPUS UK

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Letter from government regarding staying home

kingsnorth profile image
26 Replies

Has everyone with lupus been sent a letter with regard to Covid19. I’m from U.K. but currently in Spain and haven’t seen my post since December (I should have been home now)

26 Replies
tremarel profile image
tremarel

Yes we were supposed to be there but didn’t take our last flight in March. Thank goodness we didn’t go as would av been worried about all my medications by now. How u managing ? What part of Spain are u ?

kingsnorth profile image
kingsnorth in reply to tremarel

Hi there l have been here since December we come out here every year for the winter months. I bought enough meds with me until the beginning of April but have been them over the counter in the pharmacy. I could get them on prescription as I’m 70 and entitled to free prescriptions but because of the virus l don’t want to chance going to hospital for prescription. To be honest the meds don’t cost too much, l can’t get any hydroxy though only because at the moment there isn’t any in stock x

tremarel profile image
tremarel in reply to kingsnorth

Yes that’s what I do & it’s great u can buy loads there. As I’m kidney transplant patient I know I wouldn't be able to get the some of the drugs & would have to pay. The hospital s are great there. I have been there a few times at Torrievieja one . We spend a lot of time in Spain as weather helps my pain. Having a house there is great cause we come & go as we please. Stay safe & well

kingsnorth profile image
kingsnorth in reply to tremarel

We are in Torrevieja near La Mata we love it here the salt lakes are nearby and the air is healthy and the warm weather is good for my joints. We have had two flights cancelled so far but have one booked for June I’m am really anxious about flying though with this virus about but hoping by June things may be at least a bit better. It’s total lockdown here not even allowed out for a walk but l feel safe and Spain are doing a grand job if I’m honest.

tremarel profile image
tremarel in reply to kingsnorth

Aww not far from us then ! We at Cabo Roig. I am missing so much now. We would normally be out there now. Can’t even go to our lodge in Devon either 😩. So we under house arrest in South Wales 🤣 . Never mind hopefully won’t be for too much longer. Yes same here it’s worrying flying now as even after lockdown the virus still going to be around. We’ve not booked anything yet only flight at moment is October one. Would like to get something for end June but we’ll see.

CarolMcl profile image
CarolMcl

No, not everyone with lupus will be sent a letter. It depends on which drugs you are taking and they also take into account other conditions such as lung involvement etc

kingsnorth profile image
kingsnorth in reply to CarolMcl

Thank you Carol I’m on low dose pred only 2mg a week which is a maintenance level. Would l have also received a test do you know

CarolMcl profile image
CarolMcl in reply to kingsnorth

hps.scot.nhs.uk/web-resourc...

This is a link from the Scottish NHS which sets out the criteria, I'm almost positive the same applies to NHS England

kingsnorth profile image
kingsnorth in reply to CarolMcl

Thank you very much that was helpful l wasn’t on the list even though l also have liver disease PBC but I’m isolating anyway x

CarolMcl profile image
CarolMcl in reply to kingsnorth

Please also note that even though the criteria has been charted, not everyone will fit neatly into a box. If you can, you should phone your GP back home to clarify your situation

kingsnorth profile image
kingsnorth in reply to CarolMcl

Thanks l will do

kingsnorth profile image
kingsnorth in reply to CarolMcl

I just wondered whether those that got a letter also got a text

CarolMcl profile image
CarolMcl in reply to kingsnorth

I got two letters on the same day, I was one of those that was missed when the first lot letters were sent. I also then started to receive texts messages from Gov. Scot advising that they were aware I was on the list and that grocery stores would contact me with regards to getting a priority delivery slot, the option to receive a free weekly box of basic essentials and help with getting medication delivered.

kingsnorth profile image
kingsnorth in reply to CarolMcl

Do you have any other autoimmune diseases or are you on immunosuppressants

CarolMcl profile image
CarolMcl in reply to kingsnorth

I have lupus with scleroderma overlap, Raynauds and interstitial lung disease. I take hydroxychloroquine 400mg daily, previously was also taking azathioprine but had to stop as my liver didn't take too kindly to it 😏

kingsnorth profile image
kingsnorth in reply to CarolMcl

Your lung disease will make you high risk. Such a lovely photo of you on here you look young and vibrant. I’m 69 so double whammy. Take care and stay safe thanks for your input x

CarolMcl profile image
CarolMcl in reply to kingsnorth

Thanks but certainly don't feel young and vibrant . Can I let you into a secret, the photo is 4 years old and I'm 55 😁. Yes, I definitely think it was down to the lung disease and not the Lupus itself but saying that I didn't fit neatly into any of the criteria so I think that's why I was missed first time round. You take care too, stay well and stay safe xx

kingsnorth profile image
kingsnorth in reply to CarolMcl

xx

Tre123 profile image
Tre123

Yes I did I got a text first then the letter 2 days later

kingsnorth profile image
kingsnorth

Thank you l don’t know if I have a letter as can’t get home but haven’t had a text

ShannonB profile image
ShannonB

Here's a helpful flowchart that lupusUK shared: leedsth.nhs.uk/assets/f6d9e...

kingsnorth profile image
kingsnorth

Thank you Shannon it’s as l thought l only take 2mg of prednisolone a week as a maintenance dose so not included in shielding dose

Spotty-ewe profile image
Spotty-ewe

Hi Kingsnorth, I have SLE and other underlying conditions and have not received a letter or a text. I live in the south of Scotland. Our GP asked my husband on a recent telephone appointment whether I’d received my letter yet. He was not pleased to hear I hadn’t and told hubby that I should treat myself as high risk. Hope that helps.

kingsnorth profile image
kingsnorth

Thank you it does help. I’m not taking any chances and isolating at the momentb

Kevin53 profile image
Kevin53

Stay safe. Best wishes Kevin

kingsnorth profile image
kingsnorth in reply to Kevin53

Thank you Kevin you stay safe as well x

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