Have SLE and Anti viral for covid

[MrGrey1234]

I have just received a text to say I qualify for the anti viral for covid, I was diagnosed with SLE 4 years ago, can't understand why it's taken so long, im on hydroxychloroquine, and it says can interfere with this, has anyone had this or can advise thanks, a bit confusing

[marypw]

Yes, I got an email from them today as well. I’m only on hydroxychloroquine and not immunosuppressive, so I was surprised.

[MrGrey1234 in reply to marypw]

Yes I was surprised, I also googled, and it says there is an interaction between the anti viral and hydroxychloroquine, so we might not get it

[Debbie_kinsey Administrator LUPUS UK]

Hi MrGrey1234

As far as we're aware, people with lupus who are only on hydroxychloroquine and not on immune-suppressing treatments or corticosteroids are usually not considered to be in the "highest risk" category and so aren't eligible for these treatments. Our article on the treatments has information on who is eligible for COVID-19 therapeutics: lupusuk.org.uk/covid-19-tre... . We haven't heard anything about this criteria being expanded.

It's interesting that you, and a few other people according to comments on this post and another, have now been sent information saying you're eligible. It's possible that you've become eligible based on one of the other criteria, or due to a mistake in coding on your medical records. If we hear anything about the eligibility criteria being expanded to include all people with lupus, we'll let you know.

Best wishes

Debbie

[MrGrey1234 in reply to Debbie_kinsey]

It does seem strange that we have just received it, im wondering whether its because I've just also had half my thyroid removed, not sure, might contact covid clinic

[Debbie_kinsey Administrator LUPUS UK in reply to MrGrey1234]

It could possibly be; if you have a look at the criteria in the article you can see if you match any of it. But yes, a call to your GP or clinic might clear it up!

[Turquoise-1 in reply to Debbie_kinsey]

I have SLE (Lupus), take no Lupus specific drugs at all (eg Hydroxychloroquine) and I received an email 🤷🏻‍♀️.

I will clarify tomorrow with Lupus Advanced Nurse Practitioner who I am seeing at the Connective Tissue Disease Clinic in Rheumatology Hospital…..I’ll update you if she reveals anything significant! 🙂

[BonnyB in reply to Turquoise-1]

Please let us know x

[Turquoise-1 in reply to BonnyB]

See my reply to Debbie-kinsey ….. 🙂

[Debbie_kinsey Administrator LUPUS UK in reply to Turquoise-1]

That would be great, thank you!

[Turquoise-1 in reply to Debbie_kinsey]

I showed her the email & before reading it through she said, “Is it a scam?” Once she’d read it properly she said, that as a Rheumatology Hospital they were not aware of any changes regarding Lupus & CTD patients now being automatically classed as in the vulnerable/at risk category unless they were on a Biological Therapy. It’s the medication & what it does to the immune system that makes the patient clinically vulnerable not the disease itself in this instance.

However she did stress that should any patient with an autoimmune disease get Covid-19, they often do tend to be more unwell than non-autoimmune patients.

On asking her if she’d come across other patients who’d had the same email she said, “No” but would check with the Consultant Rheumatologists and fellow team members.

Incidentally, my husband who has RA also received the same email which is understandable as he is immunocompromised due to having Rituximab IV infusions, (which switch off his TNF); He also takes DMARDS. The nurse I saw today is also his Biologics rheumatology nurse. …. She’s proper busy!

As the Senior Clinical Lead in the Connective Tissue Clinic, Biologics & Rheumatology she has vast knowledge & experience. Her advice was to contact 111 if the Covid test shows positive as an anti-viral can be delivered to the patient’s home address if need be. The feedback she’s had from her patients who’ve had cause to use 111 because they’re immunocompromised & tested positive for Covid has been very good.

To date neither myself nor my husband have had Covid & despite him being immunocompromised, he chose to work all through the pandemic & still continues working in a front facing customer service roll…..It’s a mystery as to why some get Covid, (often more than once) and some don’t……

She said the NHS have sent you a letter for good reason after you’ve been identified as having a legitimate autoimmune disease & that also your husband is immunocompromised, so should the need arise, use the service that has been offered to you.

Not sure if this clarifies anything at all for anyone but that was my experience today! 🙃

[BonnyB in reply to Turquoise-1]

Thank you.It's just strange that all of these drs, nurses etc know nothing. X

[Turquoise-1 in reply to BonnyB]

I agree, it does seem strange.

When I asked her if other patients had said they’d had an email, I expected her to say, “Yes” as it’s such a busy, specialist Rheumatology Hospital with full clinics.

The team there are involved in up-to-date training and clinical trials, in fact I was invited to take part in one.

Having worked in the NHS myself for many years, I can only assume that the department from which the emails were sent works independently and does not liaise ad communicate with individual hospital departments. 🤷🏻‍♀️

[BonnyB in reply to Turquoise-1]

nhs.uk/conditions/coronavir...

[BonnyB in reply to BonnyB]

Scroll down to how was this list decided x

[MrGrey1234 in reply to BonnyB]

Does that mean it's just trial ?? x

[BonnyB in reply to MrGrey1234]

I don't think so. I read it as Oxford a separate study.

[BonnyB in reply to BonnyB]

Review 24th April 2023. Have they brought it forward ?

[Turquoise-1 in reply to BonnyB]

Hi BonnyB,

Mine & hubby’s box of tests have arrived as stated in the NHS email. I’ve posted a photo 🙃

[MrGrey1234 in reply to Turquoise-1]

Hi Bonnybridge, sorry no photo attached x

[BonnyB in reply to MrGrey1234]

I found it x

[Turquoise-1 in reply to MrGrey1234]

Scroll to end of the thread…⬇️

[Turquoise-1 in reply to Debbie_kinsey]

Hi Debbie,

Following on from the start of this thread, the said Tests mentioned in the NHS email I & others received, have now arrived….see photo, I posted to MrGrey1234. 👆

[Chris21 in reply to Debbie_kinsey]

if the email everyone’s receiving is the same as mine, it doesn’t actually say eligible for antiviral, it’s more along the lines of, at higher risk and eligible to receive rapid flow tests from government and if you test yourself they want you to report it, even if it’s negative but you can’t report if it’s a test bought from a shop. If you test positive, then they will decide if you would benefit from an antiviral. Haven’t worked out yet, why the sudden change.

[Polina44]

Yes I too have had the same email. I have SLE am only on hydroxychloroquine but also have autoimmune thyroid disease.On other meds too but nothing new.

Lx

[LesliT]

I’ve had the same today - I have UCTD, previous APS positive and only treated with aspirin and hydroxychloroquine. Symptoms have been worse recently and blood tests showing more flare type things. Was still very surprised to receive the email. I am being investigated for lymphoma at the moment - waiting for CT results. Couldn’t decide if it was that ?!

[SonyaNME]

I’m high risk due to immunosuppressives but when I had Covid in September they didn’t give me antivirals & said they aren’t really using them even though that was contrary to what the NHS website said at the time 🤷‍♀️

[Petrof]

Got the same email. Currently in remission feeling generally good. Age 64.

[Sara_A]

Very bizarre as usually just for high risk immunosuppressed patients like on immunosuppressive meds and higher dose steroids. I'm on hydroxychloroquine and I've had antivirals twice and I cant remember them discussing any contraindications when prescribing them?? They did for a lot of my drugs bit Im sure I didn't have to stop them 🤔

[CavendishCool]

Me too, rather strange because my text arrived minutes after I had a chat with my GP about possible Psoriatic Arthritis. It was if he had hit a magic button. Also, bit like shutting the stable door after the .... you know as I'm recovering from a fairly recent bout of Covid. Key word here, which I do appreciate is recovering. Have a good day everyone.

[Lucylou72]

Same. I got an email yesterday. x

[CarolP2390]

I also had a letter yesterday.

[Chris21]

I had email yesterday and thought it might be a scam 😂 but my daughter also got one. It seems they are expanding the criteria but not sure what’s included to make it expand. maybe Debbie can find out more for us. I’ve had lots of respiratory problems and my daughter has diabetes so not sure if this is why we’re included 🤷‍♀️ both of us are on hydroxychloroquine but I’m not sure if that is the reason? I’m sure we’ll find out in due course. 😁

[Minnie2000]

I have just started the antiviral meds and was sent a letter a while ago to say I would be eligible. I just take hydroxychloriquine but am also recovering from breast cancer. They didn't mention any interference with my lupus medication. Take care.

[Olive12345]

I got one yesterday too! I’ve been on hydroxychloroquine for a few years and also have scleroderma. I had long covid in 2020 and have had breathing problems since but I’ve also had covid again after the jabs started and it was relatively ok so not sure why I got the email 🤷‍♀️

[Larks0ng]

I also received this letter, surprisingly. Have had SLE for 38 years, also underactive thyroid. Take hydroxychloroquine and thyroxin. Agree with the stable door comment above!

[Tazuk]

my husband got this too and he’s recovering from cancer, I’m on immunotherapy and I haven’t received it, neither has my daughter, whose also qualifies, my husband also received a set of tests in the post Tx

[dg70]

Another here. I got the email yesterday and just on hydroxychloroquine. I have sle and sjogrens.

[Whippet_lady]

I'm in Scotland, have SLE and currently have covid. I take methotrexate injections, prednisolone, hydroxychloroquine and mepacrine. On the first day I tested positive I phoned the antivirals number and they said, out of the ones they supply, there was only one I was eligible for because the other interacted with my meds (they didn't say which meds). They gave me a 5 day course of Molnupiravir without hesitation.

I haven't had an email but I suspect those who have are in England so I can't comment on that.

[lupie46]

I've had antivirals with hydroxychloroquine without issue. I had antivirals because of my immunosuppressants though.

[Beatrice66]

I received email yesterday as well. Taken off methotrexate injections in sept 21 as caught covid and was in icu . Since then have been diagnosed with chronic lung scarring. Presume , I received because of lung condition.As I didn’t receive when I was taking methotrexate. Still on hydroxychloroquine and blood pressure tablets .

[Guatmom]

I’m in the USA and if you test positive for Covid, it’s very easy to get Paxlovid. Physician sends in script and it’s free at the pharmacy. I tested positive the beginning of December and I started antivirals within 6 hours. I don’t know if it was that or having 5 vaccines, but I had a very mild case.

[Tykle]

Same email and surprised too as nothing has changed in the last few years.

[Fredwinston19]

I had the email yesterday, despite being in the shielding group due to not having a spleen, this is the 1st time they’ve actually acknowledged my possible eligibility for antivirals. I did have covid in Dec 22 and got antivirals arranged by rheumy but good to see I might finally get added to the official list.

[25clai]

I have had the email too as many above have. I have Sjögrens and am on hydroxychloquine, have neurological problems. At first I thought it was spam in my inbox. I have had Covid twice in the last year, the second time I got shingles straight after, so wondered if the letter related to that complication.

By chance I had to go to my gp today as it turns out I have shingles again (3rd time now). The gp said it is due to hydroxychloquine. I checked with my rheumatologist when the pandemic started and was told the hydroxychloquine doesn’t suppress the immune system so not vulnerable.

Have they come up with some new research all of a sudden? Apparently I now have to declare it to my employer, which I really don’t want to do for a number of reasons. One of which is, I declared my vestibular migraine problems to a previous employer and ended up unable to do the part of the job I loved best, due to employer restrictions- insurance etc, which is why I am reticent with my current employer.

Are there certain antivirals which are not compatible with hydroxychloquine, which are Covid treatment specific. If so which ones?

I’ve been given the standard acyclovir for shingles today.

[Chris21 in reply to 25clai]

hi 25clai, thanks for clarification of GP, it is all strange isn’t it? I too thought it was a scam 😂 can’t be too careful these days. Gosh! You are going through it all at the moment. I’ve never had shingles but am told it’s very painful and how unlucky you’ve had it 3times! Best wishes for a speedy recovery.

[Poshcards]

Hi, I had an email from government/NHS yesterday regarding this, I had all of the original isolating ones but then felt i had fallen off the radar for a few years, now I am back on it and very grateful at last again x

[BonnyB]

Me too. Sods law, I had covid for the third time 4 weeks ago.

I'm uctd and sjogrens, take hydroxychloquine.

My consultant did query the other week why I hadn't had vitals to help. Told him I'm not eligible. He said you're clinically vulnerable.

Explained I never had a text or email and worked in school all through covid and the scarlet fever outbreak. He said I shouldn't have.

Who knows what's going off. X

[Blue_feather]

Same email. I have limited systemic sclerosis and take Plaquenil. Like others, i terested to know why the email.

[Pinky1go]

I received an e mail early this week. I have MCTD probable Lupus and Sjorgens. Just taking Hydroxychloroquine. I received my lateral flow tests this morning. The use by date is August this year, shorter than the ones I already have here. Was just wondering if this is a way of clearing the old stock so not to be left with them out of date like the PPE!!! 🤔 Just a thought.

[MrGrey1234 in reply to Pinky1go]

Maybe, can I ask how they diagnosed you with sjorgens, I have lupus, but have been getting blisters in my mouth and corners if my mouth splitting and dry mouth, my rheumi said he is going to send me for a lip biopsy but not heard anything,.

[Pinky1go]

I have not officially been diagnosed with it, just probable. But by the symptoms, which overlap, really with Lupus etc. Dry eyes, mouth included, and the sores. My loer lip and side of my face swells, but as yet have not had a lip biopsy. But about six years ago, I had terrible urticaria, and my rheumatologist was surprised they didn't do a biopsy then either. The hydroxychloroquine has helped with the urticaria.

[MrGrey1234 in reply to Pinky1go]

I'm on eye drops, and have the pastels, and oraleve for my mouth , but they don't help with the blisters, and cracked mouth,

[StriatedCaracara]

Found this Gov.uk guidance page applying to England (separate guidance I believe is available for Wales, Scotland and NI).

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

Think so many more of us now included. I got my first free lateral flow test pack today.

[Turquoise-1]

Hi MrGrey1234,

Further to mine & others’ replies , myself & my husband have both now received a box containing 7 Rapid Tests for SARS-CoV-2 Antigen, (Nasal Swab) (Gold).

On the box the ‘Fulfilment Site’ (which I presume is the Distribution Centre), says, “Nottingham,” but there is a return address, (with full details), which is in Edinburgh.

There is a 24 page instruction/information booklet to read through! Lol….

As ever, any result is to be reported to NHS Test & Trace.

It saddens me that just like the Lateral Flow Test kits, majority of the contents are not recyclable. Also, the expiry date is August 2023.

Best wishes 🙂

Tests received following recent NHS email.

[BonnyB in reply to Turquoise-1]

Thank you x

[MrGrey1234 in reply to Turquoise-1]

Thankyou xx