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.
Have a look at the link Paul sent a couple of days ago, it's very informative and should answer your questions
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
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.
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
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!!
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
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!
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.
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
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
No need for sorry on this forum! Done! xxx
Thank you!
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!
Just paste the hyperlink into a new post...thanks Kay!!! xxxx
What’s a hyper link?!
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
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
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
Try this: Google: Corona virus threatens people underlying health problems, New York Times
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
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
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
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
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?
lupusuk.org.uk/coronavirus/
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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