Press Release: People with rare autoimmune rheuma... - LUPUS UK

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Press Release: People with rare autoimmune rheumatic diseases at increased risk of death during COVID-19 pandemic.

Paul_Howard profile image
Paul_HowardPartner
35 Replies

The National Disease Registration Service at Public Health England and the British Society for Rheumatology have published press releases today about findings from a new study.

rheumatology.org.uk/News-Po...

It has been revealed that people with rare autoimmune rheumatic diseases (including lupus) have had an increased risk of death compared to the general population during the COVID-19 pandemic.

We've published an article discussing the results lupusuk.org.uk/covid19-pand...

35 Replies
steve61 profile image
steve61

But we not being protected by the government like we were in March/July time!

Spanielmadlady profile image
Spanielmadlady in reply to steve61

Cant see us being prioritized any further for vaccination either.x

KayHimm profile image
KayHimm in reply to Spanielmadlady

Don’t you think lupus patients with organ involvement will be prioritized in the second tier? I think many lupus patients will fall under the category of “underlying medical conditions at risk for severe Covid illness, regardless of age.”

Not sure where patients will fit who are on high dose steroids. The risk is high but, then again, are they able to tolerate the vaccine?

Spanielmadlady profile image
Spanielmadlady in reply to KayHimm

Yes we are 4th in the queue and I dont expect to get a vaccine before spring.i think we should be moved up to tier 3 and be vaccinated before healthy 75s

KayHimm profile image
KayHimm in reply to Spanielmadlady

That sounds right. I was trying to figure out when my niece with asthma would get it here in the U.S. Best calculation I could make was March/April. Hard to predict how the process will go.

Spanielmadlady profile image
Spanielmadlady in reply to KayHimm

I hope you both stay well until vaccination time xx

KayHimm profile image
KayHimm in reply to Spanielmadlady

Thanks! I fit into an unclear category. I have had Covid and still have high enough antibodies to donate plasma. I will not be a priority and may not even need the vaccine.

Xk

KayHimm profile image
KayHimm in reply to Spanielmadlady

Just saw the UK guidelines. Looks to me like lupus patients would fit into tier 4 or 6. That would mean access to vaccine pretty soon, I think.

suzannah16 profile image
suzannah16 in reply to KayHimm

how do you know which tier lupus patients would be in? I can't find anything other than age based tiers.

KayHimm profile image
KayHimm in reply to suzannah16

I saw a tiered list and reasoned that lupus patients would fall under one of two categories that were listed.

Medically high risk patients will come before healthy patients under 65 in the US based on the guidelines that have been put out. Looks like there will be variation among states here.

Will try to find the one I saw in the U.K.

Roarah profile image
Roarah in reply to KayHimm

In my state using the CDC advice, phase 1a is all medical personnel and nursing home patients will have their first shots by January 25. Then phase 1b will begin. Starting with essential workers then over 75 and younger high risk groups. This should be complete by May. Then everyone should get their first dose by June. This is contingent on no supply chain issues. That is a big if.

KayHimm profile image
KayHimm in reply to Roarah

Big if is right. Apparently, after the first phase, not much has been done at the higher levels. 🙁

KayHimm profile image
KayHimm in reply to suzannah16

Try express.co.uk

Freckle1000 profile image
Freckle1000

Thank you for posting this Paul.

And all the dedicated time and effort to make things better for Lupus sufferers.

Hatelupus profile image
Hatelupus

Thanks Paul, I think most of us knew all along we were high risk but this just confirms our fears unfortunately. Hope everyone is staying well x

Thanks Paul. I think, from reading comments here, people are assuming that this study shows that people with RRADs are at increased risk of dying from Covid19.

This is not necessarily the case at all. They could be dying because their healthcare has been severely compromised, important treatments postponed, lack of monitoring or face to face reviews, symptoms going unreported, co-morbidities (sorry I hate that term!) going ignored.

The next study will be looking into causes stated on each death certificate. This BSR study just used data about how many rheumatology patients have died since the pandemic started, ages and gender - not causes of death.

“Conclusion

The risk of all-cause death is more prominently raised during COVID-19 among people with RAIRD than among the general population. We urgently need to quantify how much risk is due to COVID-19 infection and how much is due to disruption to healthcare services.”

Jmiller623 profile image
Jmiller623 in reply to

We don’t know the reason. The paper is pretty transparent about that but the numbers are real regardless the cause.

in reply to Jmiller623

Yes that’s my point - it’s the cause that really matters. We don’t yet know the causes of deaths - just that there have been a disproportionate amount from the rare rheumatic disease community here in UK. But not necessarily directly from Covid.

I’m not sure whether it’s the same in the US but here’s what an English patient with severe scleroderma says about her care:

rheumatology.org.uk/news-po...

“Nicola Whitehill has been living with the rare autoimmune disease, scleroderma and Raynaud’s (systemic sclerosis) for 23 years. She said: “For patients with conditions like mine we have been left behind for too long, with not enough investment and research into rare diseases. This research, while it is alarming, is very much welcomed to help improve understanding around the impact of COVID-19 on these conditions.

“Since the pandemic, all my medical appointments have either been cancelled or conducted via telemedicine. This research must be the catalyst to find out urgently the reasons why people with these conditions have been so adversely affected. As well as establish the similarities which are being seen with long COVID.”

Melba1 profile image
Melba1 in reply to

Very good point, and also the risk is only slightly raised from the general population. Most recent studies are only finding a very SMALL additional risk for lupus and other rheumatic diseases from Covid, much less than initially thought.

Good for everyone to be cautious still but also important to not let mental health get damaged by worrying about risks being much higher than they actually are in reality.

Jmiller623 profile image
Jmiller623

Oh man. I thought we would do pretty well with all the immunosuppression. Thanks for sharing! I’ll be sharing the news with a US COVID physician group.

Fisher50 profile image
Fisher50

OMG I've just been diagnosed with autoimmune Rheumatic Disease Undifferentiated and many of my symptoms relate to lupus.

WinterSwimmer profile image
WinterSwimmer

Where I live, there is virtually no healthcare at the moment. I have seen the renal consultant once since last October (2019) and have had one short unsatisfactory conversation on the phone with a rheumatologist since the start of the pandemic. Appointments have been sent and then cancelled repeatedly - often at the last minute. Monthly blood tests have been abandoned (although that is the protocol for Mycophenolate). I have to phone if I want one and then it is done grudgingly and with a lot of questioning. You cannot get to see a GP for love nor money, even though our little community claims to have no covid-19 infections.

I'm lucky - I can read and interpret my blood results well enough to know how the lupus is going. Some people can't. It wouldn't surprise me at all to find that this is one reason more people with conditions like lupus have died during the last 10 months.

stiff19 profile image
stiff19

Wonder where undiagnosed with what well could be rare auto disease stand , no one looks out for us 🤷‍♀️

KayHimm profile image
KayHimm in reply to stiff19

Stiff - how are you feeling? Any word about your test results?

Xk

stiff19 profile image
stiff19 in reply to KayHimm

Fairing ok at mo thanks kayhimm, apart from him mentioning erythromelalgia, he said the tests would take a while , 🤷‍♀️ I’m feeling a bit better at moment but worry when I don’t such is the nature of this 🤷‍♀️ Never know from day to day what’s in store but also using common sense being careful , given no guidance or diagnosis . My gain of mental strength from here from you all, is helping me along with remedies for certain things , but it’s a worry at times for sure. Thankyou hope you are well as can be kayhimm 🤗xx

KayHimm profile image
KayHimm in reply to stiff19

Glad you at okay at the moment. I know erythromelalgia can be really painful. Several on the forum have it.

I wonder if you are better now that you aren’t going outside in the heat and sun as much? I remember your reacting to just getting laundry on a sunny day.

You have had such a diagnostic nightmare.

Xk

stiff19 profile image
stiff19 in reply to KayHimm

It’s quite difficult as raynauds when cold too so it’s extremes i cool then toes go blue 🤷‍♀️ Still eye/face bad🤷‍♀️ They want heat indoors I don’t 🙈 it’s madness. But no summer heat is helping 👍 My toes keep shrinking like contracting🤷‍♀️ And with these dips appearing feet hands face I’m no doc but seems like to do with tissues 🤷‍♀️ I can only but suspect myself, lots going on. I just hope he can help with tests but I still think I need a rheumy my right arm is getting more solid 🤷‍♀️ Answers can’t come soon enough.🙏🙂xx

KayHimm profile image
KayHimm in reply to stiff19

You may need a few different specialists. The Raynaud’s and Erythromelalgia is certainly in a neurologist’s area of expertise. The question is what is causing it? Did the neurologist mention possible neuropathy?

What do you mean your right arm is getting more solid? Sounds upsetting.

stiff19 profile image
stiff19 in reply to KayHimm

It’s firm and getting hard to use, my forearm and bicep area. Wether it’s muscle not decontracting or🤷‍♀️ It’s hard to explain, dermy when felt it said it seemed like scleroderma on inside but not outside on skin though I have two hard knuckles and oval patches on fingers, toes . My skin really not been looked at just glanced at as my other symptoms and face just took over with them but obviously still not seen. Neuro just said he’s doing genetic testing, said you can test negative for myasthenia graves but still have it but I don’t feel it’s that 🤷‍♀️ Having lost tissue mass in hand and one foot I just don’t know xx

KayHimm profile image
KayHimm in reply to stiff19

If there were any clues with your skin, the dermatologist would have loved to pick up on it. So complicated. That is upsetting about your arm. I don’t know much about scleroderma but think your skin would show something by now and your ANA should be positive. That is interesting that neurologist says myasthenia gravis test can be negative. So he is still considering that, right?

Hope you get answers soon. xk

stiff19 profile image
stiff19 in reply to KayHimm

I don’t know as not heard from him since and unless I’m actually seen in clinic I find it hard for them and me to diagnose anything 🤷‍♀️ Xx

Naladog profile image
Naladog

And also there is other research on steroids :

sciencedaily.com/releases/2...

Meg52 profile image
Meg52

Thanks for posting this report Paul. Your work is very much appreciated. I fall into the clinically extremely vulnerable and I've been very concerned where we would be on the vaccine list. I might have misread it, but I understand if there's limited vaccine we would be moved up the priority list.

Paul_Howard profile image
Paul_HowardPartner in reply to Meg52

Hi Meg52 ,

There is very little certainty or clear communication about the COVID-19 vaccines and how/when they will be provided for people with lupus. I'm attending lots of virtual meetings about this at the moment and we'll share more information and guidance as soon as we are able.

Meg52 profile image
Meg52 in reply to Paul_Howard

Thank you Paul.

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