Coronavirus worries: Are people with Lupus more at... - LUPUS UK

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Coronavirus worries

Quini70 profile image
28 Replies

Are people with Lupus more at risk if they catch Coronavirus Covid-19?

If so shouldn’t they be added to the at risk list such as those with diabetes, heart disease etc.

Feel too many people no nothing about Lupus - I would estimate less than 2% of people I know are aware of what it is.

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Quini70 profile image
Quini70
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28 Replies
CarolMcl profile image
CarolMcl

Have a look at the link Paul sent a couple of days ago, it's very informative and should answer your questions

Quini70 profile image
Quini70 in reply to CarolMcl

Thank you for your response - much appreciated - still think the government should elaborate more - I’ve yet to see the word Lupus come up for people in the high risk of complications from Coronavirus

KayHimm profile image
KayHimm in reply to Quini70

It usually comes up under autoimmune diseases or patients who receive immunosuppressants. Are those not on the list you see?

An article in a major America newspaper describes the large group of chronically ill who are at risk for severe complications of the coronavirus, and lupus is specifically mentioned.

eekt profile image
eekt in reply to KayHimm

Have you a link to it Kay?? Autoimmunity has been mentioned once in the UK, in a BBC article, but not at all in government advice...so when people call 111, they're told by the responders that they have to say what govt says and that's all...ie no special advice for autoimmuners... Thanks xxx

happytulip profile image
happytulip in reply to eekt

Ha! Makes me laugh! I have an acquired immune deficiency and no functioning innate immune system, adaptive is creeping along. I'd like to have a 111 call handler tell me that I'm not at risk!!

eekt profile image
eekt in reply to happytulip

How about we ask Paul to start a government petition to ensure autoimmuners, HIV/AIDS and those immunosuppressants due to cancer and organ transplant are given specialist advice??...the target is 100,000 signatories, so wonderful LUK - at 26,000 members - alone wouldn't do it, but together with cancer, HIV/AIDS, Type 1 diabetes and transplants?

Stay safe HT xxx

happytulip profile image
happytulip in reply to eekt

Good idea. I've just checked the Royal Society of Rheumatology website (sorry, am.rubbish at posting links) and they say anyone on steroids, immune suppressants or biologicals are at risk. Can't remember if it said risk or high risk. Memory of a gold fish!

KayHimm profile image
KayHimm in reply to happytulip

There was also an op ed in one of our newspapers from a man with psoriatic arthritis, on biologics, who stresses that everyone take precautions for people like him. Good and powerful article.

eekt profile image
eekt in reply to happytulip

It's 'high risk' HT and here's the link (now I know how! :) ):

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

It says 'Specific advice is currently being developed by NHS England and Public Health England.' hm, and Scotland..? xxx

happytulip profile image
happytulip in reply to eekt

I have no idea how to do this on my phone but it might be a good idea to put that up as a post on the LUK forum? Would you mind doing that? I would if I could but I can't seem to upload it. It might help alot if people, especially those people with a new diagnosis or starting out on DMARDS or BIOs? Would that be ok? Sorry x

eekt profile image
eekt in reply to happytulip

No need for sorry on this forum! :) Done! xxx

happytulip profile image
happytulip in reply to eekt

Thank you!

KayHimm profile image
KayHimm in reply to eekt

eekt - I will try to get the New York Times article and the others. I will need help from a more competent techie to get it posted!

eekt profile image
eekt in reply to KayHimm

Just paste the hyperlink into a new post...thanks Kay!!! xxxx

KayHimm profile image
KayHimm in reply to eekt

What’s a hyper link?!

eekt profile image
eekt in reply to KayHimm

If you click on the address line eg healthunlocked.com/lupusuk/...

for this post, then copy it, you can simply paste it into the text you're writing (took me a while to figure that out! :) HUgs xxx

KayHimm profile image
KayHimm in reply to eekt

Eekt - our CDC only mentions “serious medical conditions” and then diabetes, heart disease and lung disease. I would think multiple sclerosis, lupus, cancer and anyone on immunosuppressants as well many other illnesses qualifies as “serious medical as l condition.” Curious why they chose to mention those three only. Many because they are the top three in mortalities.

So that is the official statement. It seems the best course of action is to be in touch with your doctor if you are in a risk group and have symptoms. We are told to not go to the emergency room or to the doctor’s office.

Will try to get you the NYT article because it was trying to show how many people have chronic health problems that put them at risk. Lupus was mentioned.

Couldn’t get alcohol today, have no hand sanitizer, but I think the hydrogen peroxide is supposed to work. 😩

Take care

xk

eekt profile image
eekt in reply to KayHimm

Problem is in the UK that some docs and helplines are saying they can only say what the govt says...nothing special for those with 'underlying health conditions'

Saw the CDC list is the same as the WHO...just replied somewhere maybe LUK could start a govt petition for autoimmuners, cancer, Type 1 diabetes, HIV/AIDS and transplants - anyone on immunosuppressants - to be given specific advice, and Kevin our hero chairman has liked it!

I've ordered a still, quick before they're all sold out! xxx

KayHimm profile image
KayHimm in reply to eekt

Try this: Google: Corona virus threatens people underlying health problems, New York Times

eekt profile image
eekt in reply to KayHimm

Got it! Great throw!!! Thank you!

*Immunocompromised*

People with compromised immune systems are especially vulnerable to respiratory infections. That group includes those who have autoimmune disorders such as lupus and arthritis, those who have had organ transplants, patients undergoing chemotherapy and other cancer treatments, and anyone who is taking steroids as treatment.*

nytimes.com/2020/03/12/heal...

Cheers Kay, thank you so much...validation for lupies somewhere! XOXO

KayHimm profile image
KayHimm in reply to eekt

You’re welcome. Surprised this hasn’t been acknowledged more. I seem to being seeing it a lot but in articles that go into more detail, not the CDC.

Xk

eekt profile image
eekt in reply to KayHimm

There's been one plaintive article in the press in the UK, The Guardian, appropriately enough (can't find it now..)...the British Society for Rheumatologists says Public Heatlh England (the CDC equivalent) is 'preparing guidance'! Thanks Kay! XOX

KayHimm profile image
KayHimm in reply to eekt

That’s crazy! Unless that means the difference between self-isolation and the regular guidelines. My friend on immunosuppressants was told by her rheumatologist to stay away from crowds and the usual stuff.

Hmm .. maybe there aren’t two guidelines. Our CDC just mentions the highest risk groups but does not mention they do anything special (will double check).

There is a lot of confusion! I would look at it this way: studies show lupus even when not on immunosuppressants develop more infections. All people are more at risk for infection when on immunosuppressants. If not, they would give them out like aspirin.

I have been in touch with my rheumatologist. I am not on immunosuppressants but read about this “over-exuberant” immune in people with CV. I wondered if that may include me (anybody with autoimmune disease.) He said not to worry and, anyway, I am not as much over-exuberant as weird. It was a joke. I do have crazy stuff. But he did say last Wednesday to practice the usual stuff and also not be in large crowds. The next day universities, theatre and concerts started to get canceled. So at least I am not concerned about this weird “over-exuberant” thing - sounds like what they call the cytokine storm.

Good the internet hasn’t gone down!

XK

eekt profile image
eekt in reply to KayHimm

:) I'm glad you're just 'weird' LOL...yes BBC health correspondent described the same cascading inflammation as in lupus

Internet's surviving but HUK's server is wobbling and the UK is delaying sending everyone who has a work laptop home to work as the networks won't cope..

Maybe would should ask LUK to set up an alternative website somewhere? Where would we be without the forum?? xxx

KayHimm profile image
KayHimm in reply to eekt

Update: the government experts are now on television. The doctor emphasized the need to prioritize the immuno-suppressed, those with pre-existing conditions and the elderly when it comes to drive through testing.

in reply to KayHimm

Gov Newsome has specified it (California) as anyone over 65 or anyone with a ‘chronic illness’. We all definitely fall under chronic. I’m sure this same measure is starting to be applied all over the world?

CarolMcl profile image
CarolMcl

lupusuk.org.uk/coronavirus/

CarolMcl profile image
CarolMcl

I fully understand what you mean, I think there's just so much going on and so much to learn that it's proving difficult to get all the information out. I would also love a definitive answer from the government , not only as a fellow lupus sufferer but also as a nurse. I'm an inpatient at the moment and watching it from all sides, the hospitals are not as prepared as we've been told.

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