Latest information in how people with lupus fare when they catch Covid-19?

[Redfox25]

I haven’t been here for a while so I am not up to date. Can anyone share the latest information/studies on how people with lupus cope with Covid-19 infection please? Hospitalisations, severe illness, etc?

I have received an email from the nhs saying that I will have access to antiviral drugs within 24hrs of a positive result, have others here had that email? I have SLE.

[Sue2803]

Yes, I have received this letter and also a per test to do if I have any symptoms

[Redfox25 in reply to Sue2803]

Yes I have the PCR too.

[Krazykat26]

Hi Redfox 🤗 there have been a few posts recently about this issue. If u look at citygirl's profile you'll see that she has recently had covid n was treated with the infusion treatment. Paul posted recently too about the two treatments that are available to us CEV peeps.I have had a letter and I've got the PCR test...the main thing to stress is that treatment has to be accessed quickly..even if symptoms are mild.

I hope this helps n 🤞we never have to use this service!! Stay safe 🌈😽😽xx

[Trixie01]

Hi, I’ve just finished my ten days isolation from catching covid and I’ve been really poorly. I’m on six monthly rituximab infusions and 25mg weekly methotrexate injections but haven’t received an email or letter saying I qualified for the anti virals. Spoke to my specialist who confirmed that I definitely should have received the letter and PCR test but I’ve had nothing. By the time my PCR result came back it was 6 days after my symptoms started so no-one would give me the anti virals by then. Luckily I haven’t ended up in hospital but I feel so I’ll still and starting with a flare up already.

[Hidden in reply to Trixie01]

Wishing you a speedy recovery

[Whippet_lady]

No letter or information here in Scotland and there is nobody to contact who can tell me anything about it. We're just not to contact anyone about anything covid related any more. I'm beginning to feel overlooked/ignored/swept under the carpet again. Had my 4th jab yesterday and had a panic attack because there were so many people just dropping in for theirs, having chats in groups and not distancing. I had to ask some people to keep their distance - they were fine about it but it just shows how little people think about the considerations of others unless it is pointed out to them. Past jabs have been arranged at special times for the vulnerable so has felt very safe. No letters are being sent our for this now, it's all book online and take your chances. I found it very scary, especially after the reaction I had to just getting a cold recently. I dread to think what would happen if I got covid. It would probably be a week or so before I got to see anyone by which time it could be too late. I'm find it all quite upsetting.

[Hidden in reply to Whippet_lady]

I understand and empathise but at least you had the vaccination, well done and keep cheerful 😀

[Willow1414]

Hi Redfox25

I’ve not had a letter or email , I did ask my JP , still waiting for an answer , also asked Rheumatology Nurse , said she’s no idea about this information ???

I was wondering what meds you are taking etc . I think the letters/emails are a bit hit and miss ? .

I have read that the treatments should keep you away from being hospitalised , I think lupus Uk might be able to provide you with some of the the answers .

🦋❤️

[Redfox25 in reply to Willow1414]

Hi Willow1414, I am on hydroxychloroquine and low dose prednisolone, 5mg tapering down to 2mg.

[Willow1414 in reply to Redfox25]

Hi Redfox

Thank you for replying .

Think I might have been missed , yet Carnt find anyone to take responsibility .

I’m on hydroxychloroquine , steroid infusions and Ritxamab infusions .

🦋❤️

[Redfox25 in reply to Willow1414]

Hi Willow, I would’ve thought that being on rituximab you should have received the email and the PCR test. Keep pushing x

[Willow1414 in reply to Redfox25]

Hi Redfox

Thank you for your reply .

Finally got a letter from rheumatology .

🦋❤️