Latest re -Lupus and Covid?

[BeeManShrop]

Hello All - I hope you all had a very happy Christmas. Does anyone know the latest position regarding Lupus patients testing positive for Covid please.

My wife has had cold symptoms for the past couple of days and we decided to test for Covid this morning and we were both positive. My wife (who has SLE, RA -- on hydroxy) is now feeling more like flu symptoms. She is coughing a lot, with runny nose etc.

I rang the GP and had a locum call back but his only suggestion was paracetamol. I asked about Covid treatment for Lupus patients but he did not seem to know whether this was still available.

I have tried the NHS site but it is not clear whether my wife is eligible or not . Similarly, I wonder whether we can get free test kits but this just says if you are eligible for treatment then you can get free test kits.

My wife did have letters from the hospital and NHS in 2021/22 stating that she was "Clinically extremely Vulnerable" at that time but we do not know if this would still be acceptable.

I am concerned as, from memory, you need to have the treatment soon after testing positive for it to be effective.

I have tried the Lupus UK site but there seems to be nothing more recent than Sept 23 and that is about vaccination rather than advice to Loopys who catch Covid.

I am hoping that someone here may have some more recent experience or knowledge please.

[Autolupus]

I am not sure if they are still doing the priority anti revirals for immune suppressed still but I guess 111 should be able to clarify. Initially with that scheme you had to log your positive test on the NHS website/app and then when I did that I got a message saying someone will be in touch from the covid centre which they were. You can get free tests via a chemist but not all are signed up to the scheme. I got some last week from Boots who asked whether I had a letter which I didn't have but as soon as I said I was taking mycophenalate they said no problem. There is a form they will fill in and you need your NHS number.

[25clai in reply to Autolupus]

I read the information on this forum re the changes that have been quietly implemented, to our detriment as the vulnerable. The NHS no longer logs positive tests, but tests can be collected from pharmacies.

I went today to Paydens , my local pharmacy to pick up some tests, armed with my email stating I’m vulnerable etc. I was told they no longer issue them, but I can pay like everyone else now. Great.

I then went to boots to find out they have only just been told about the scheme to issue free tests to the vulnerable and don’t know how it works. Been advised to go back tomorrow. Hopefully boots will be your best bet to pick up free tests, as it sounds like it’s starting.

I can’t comment re eligibility for antivirals. If you don’t get anywhere with 111 , I would try your gp urgently in the am and get some follow up that way.

[BeeManShrop in reply to Autolupus]

Many thanks. I did try 111 and 119 but after many questions we were referred back to our GP --- but this time we spoke to one of the "good guys" who was very understanding and agreed to immediately send an email to another NHS department called the "Covid Medicines Delivery Unit" -- I guess they will decide tomorrow. He also suggested that we should contact our Rheumy helpdesk to ask whether a Covid infection could cause a Lupus flare (which we want to avoid at all costs). As the helpdesk is an answer machine service hoping that will be tomorrow - but no guarantee. We will get an answer eventually but it is definitely not clear or straight forward.

Thanks again.

[JLAR01]

hi beemanshrop,

I hope you and your wife have a speedy recovery. I can personally confirm that 111 are still giving out antiviral medication for COVID as I have just tested positive myself and was prescribed antivirals by 111.

I did have to really push for these though (you know how it goes with lupus….) and half the people on 111 didn’t have a clue but ask for a clinician to call you. They kept telling me to go to an and e due to my symptoms etc and took them 4 days to prescribe it finally but just keep pushing and mention lupus and symptoms etc and they should do it!

Get well soon x

[Suvi8901]

GPs can be most obstructive to lupus patients with covid .

You need to ring 111 for antiviral medications ASAP!👆

111 will then refer you onto the local covid board of the local hospital.👆

If you have tested positive with an LFT!

The most IMPORTANT thing with antivirals for us CEVs is to take these meds within 3-4 days of being tested positive. GPs just DON’T appreciate the gravity of the situation! Hence 111 or 999!

The two locum GPs at my practice were completely useless. I was so hoarse I could hardly speak!

[Betty909090 in reply to Suvi8901]

Yes! For CEVs getting antivirals straightaway is absolutely key! Cannot understand why GPs are so obstructive. It doesn’t come off their budget!!!

[tcogb]

The most up to date information available here:

nhs.uk/conditions/covid-19/...

[Spandau]

Hi, I tested positive for Covid 5 weeks ago, rang my GP surgery and was told they were no longer prescribing antivirals and to take paracetamol and rest. As I had only recently left working in Primary Care I knew this wasn’t correct so insisted on speaking to a GP (it was a Practice Nurse who initially told me no) and they immediately agreed that I needed antivirals and sent a prescription to the chemist and I picked them up 10 minutes later.

In Gloucestershire where I live there is no longer a Covid Medicines Delivery Unit and antivirals are prescribed by the GP and I thought that was the case across England now.

I am immunosuppressed and in the ECV group.

I hope you both recover quickly.

[Sarah74]

hello

I was told 2 weeks ago by my consultant

Rheumatologist that we are still eligible for treatment. And that if I did test positive then I was to ring 111 and get antiviral treatment

Hope she gets better soon x

[KnitSewPurl]

Hi all, I am currently positive to COVID been a week plus. Coughing stuff up. Chest still not right.

I did phone up GP. When I tested positive was told to go to A&E to get myself checked out .

The staff took my bloods and chest X-rays. And then came back to tell me they were normal ?? How ? She then check my chest with her stethoscope on the top of my 4 layers of clothes thick jumpers and clothes 🙄🤷 .. then said to me it's only COVID !!!. Take paracetamol.

So ,both of us my husband and I had it , he had it first than I did . He is clear now . Took him 10 days to clear. I am giving myself till this weekend to re-test again.

[BeeManShrop in reply to KnitSewPurl]

Hello KSP I hope this reply reaches all that replied -- many thanks for your helpful comments. Again it seems to show that there are different procedures re 111 and getting assessed for Covid treatment across England. Our 111 were insistent that the GP was responsible for assessment but when we did get to speak to our Gp he referred us to another department. However, this morning we did get a call from a doctor (I think she was from the Health Authority) who did conduct the assessment. Apparently, the fact that we have both had all the vaccinations and boosters etc. that now does influence the need for antivirals. It seems that if you are taking hydroxy that is one criteria that fails you to qualify. The second was time since first signs and my wife said she had a sore throat on Christmas eve which was interpreted as her having Covid for 7 days i.e. too long since first signs so second criteria failed. Lastly, my wife said that she did feel a little better than yesterday which apparently showed that it was getting better already so third criteria failed. The Dr stressed that these medicines do have nasty side effects that could be worse than the symptoms she currently has so overall the advice was -- no antivirals.

We were given a helpline number if symptoms do get worse though and were advised to take oximeter tests a couple of times a day and if the readings are over 96-97 then all is OK.

We are both reasonably content with the result and will muddle through for now. The last thing we want is to have to cope with unwanted side effects on top of the cold and headache symptoms. Thanks again to all who replied -- Have a good and happy New Year!!!

[KnitSewPurl in reply to BeeManShrop]

Yes that is what I have been doing , checking my sats level daily over the day. I have Bronchiatistis and SLE.

[janekins in reply to KnitSewPurl]

Hello KnitSewPurl

Can I just ask where you got your oximeter from please.

[KnitSewPurl in reply to janekins]

We got ours from Amazon it was said to be verified by the NHS got ours a long time ago. Long Before COVID times. Even our B/P machine.

[janekins in reply to KnitSewPurl]

Thank you for replying so quickly. We bought one online last year and reckoned it was faulty so returned it. I'll have a look on Amazon. Many thanks

Jane

[KnitSewPurl in reply to janekins]

Make sure they are UK verified with a CE stamp. And a MRHA approved.