Coronavirus: Obviously I’m 38 and got... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Markgammon06 profile image
14 Replies

Obviously I’m

38 and got APS , I’m I classed under the vulnerable list or has anyone had any information, Thanks in advance

Mark

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Markgammon06 profile image
Markgammon06
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MaryF profile image
MaryFAdministrator

Hi do look on your local NHS website/pages, social distancing and good hygiene is being encouraged, also making sure you are stocked up with what you need. Please also look up locally to see where your 'Good Neighbour Schemes' are starting up, we have several where I live so that the fit and well can support the isolated or elderly, some people have had it already and recovered in some areas. nhs.uk/conditions/coronavir... I have hand gel stations inside the front door and hidden outside, as of course deliveries still come. Try not to worry, it will make us all worse. Best wishes. MaryF

KellyInTexas profile image
KellyInTexasAdministrator in reply to MaryF

We are doing the same- setting up networking to deliver groceries to elderly, etc. ( our local H-E-B which is out Shrine of grocery store- Texas based and we 😍 it- is back logged on deliveries by several days due to “ The Stupid” that has inflicted our lone star state.

It will not be Corona Virus. It will be “The Stupid” that has descended. We are watching in horror... 5 % (?)of population has been infected and gone into hoarding mode... dear God... the memes ...

Debbweb01 profile image
Debbweb01 in reply to KellyInTexas

Hi Kelly and everyone! I tried calling the Health Department to find out who could shop for me and I also asked if u need a fever to have Corona Virus! They didn’t know to either question! I called our local news station and they said fever is just one of the symptoms! I can’t see my Hubby in nursing home, but The VA awesome and they call me and we FaceTime! I wish you the best and everyone! Godspeed

lupus-support1 profile image
lupus-support1Administrator

There are articles on LUpus Patients Understanding & Support (LUPUS) here on HU including from NHS UK. For example:

healthunlocked.com/lupus-su...

If you are worried, go see your GP.

There is some hysteria about the coronavirus. Just because it is a pandemic, doesn't mean it's the Spanish Flu (1918).

A top virologist, Prof. Jihad Bishara, Head of Infectious Diseases at the Beilinson Hospital:

“we’re talking about a virus that is not airborne. Infection is via droplet transmission… Only if you are close to someone who has the virus, and you get the saliva when he sneezes or coughs, can you get ill. And if you don’t then maintain personal hygiene,” primarily by washing hands.

“I’ve been in this business for 30 years,” Bishara said in an interview. “I’ve been through MERS, SARS, Ebola, the first Gulf war and the second, and I don’t recall anything like this. There’s unnecessary, exaggerated panic. We have to calm people down.

“People are thinking that there’s a kind of virus, it’s in the air, it’s going to attack every one of us, and whoever is attacked is going to die,” he said.

“That’s not the way it is at all. It’s not in the air. Not everyone [who is infected] dies; most of them will get better and won’t even know they were sick, or will have a bit of mucus.”

At this stage, he said, “we know how the virus behaves, how it spreads, and which groups are in danger. We know now that his virus is primarily dangerous to old people, and to people with a history of chronic disease, and those who are immunocompromised.”

Be well!

Ros

KellyInTexas profile image
KellyInTexasAdministrator in reply to lupus-support1

Lovely Ros!❤️

Ray46 profile image
Ray46 in reply to lupus-support1

Don't know about where you are but here no one is going to "go see your GP" - they aren't seeing anybody, even already booked face-to-face appointments being converted to telephone calls, today.

I honestly do not think the writing and interviews coming from medics in Italy is "hysterical", they are perfectly calmly saying we should listen, this is going to get much much worse, that they are already having to choose who gets ventilation and a chance to live, and who gets to die, and that it isn't just the old who are dying.

Most of us know by now that a dozen different doctors can have half a dozen radically different opinions about our illness and treatment - because they do not _know_, there isn't enough data, absence of evidence means opinion rules, and every doctor has one. This goes double for medical scientists and epidemiologists etc. - every model is different, every model will give different results if you give it different data and different assumptions, and as data changes every day so will the results. Is it really surprising we get radically different views from different scientists? The only truth is that they don't know, no one does.

The NHS official advice is to take Ibuprofen, the French health minister says Ibuprofen makes it worse. Huh? Fact: they don't know.

Many BP meds cause over expression of ACE2 which is the binding point for the virus (Ibuprofen does too), some doctors say therefore people on those meds are at higher risk and switching should be considered, others say the same meds acutally have a protective effect. Fact: they don't know.

Some doctors think we would be better getting more people immune now to reduce the effect of the next wave, others think we should go for elimination now and there won't be a next wave, because it isn't flu. No one can say how long the immunity will last, maybe months, maybe only weeks. Fact: they don't know.

Some people say "better to get it now", but we do not know the long term effects of exposure, SARS survivors have long term health problems from it, in animals, some coronavirus infections are mild and appear to be completely recovered, then it kills a few years later. Is COVID like that? Fact: they don't know.

Everyone here is "people with a history of chronic disease", so, as you say, this is dangerous to all of us, and we should treat it that way.

Final note: those of you on hydroxychloroquine / plaquenil, you may be in luck, it is one of the drugs being used to successfully treat this. It has also been put on export restriction in UK in last few days, this is not a coincidence. I'd advise making sure you stock up on it NOW, it might be about to get really hard to find.

lupus-support1 profile image
lupus-support1Administrator in reply to Ray46

What is known is that to keep in mind how this is transmitted ie only from direct contact with the virus as described above.

Second, if you are alarmed, contact your GP.

Third, this isn’t the Spanish flu or SARS, MERS or Ebola.

Fourth, we never acknowledge the terrible numbers of deaths each year from the flu.

Finally, stay calm and follow the advice from your health authority in question, because anxiety is damaging to our health.

My immune system is wiped out. In fact, I was summoned to see my haematologist yesterday.

Stay safe and be well.

Ros

Ray46 profile image
Ray46 in reply to lupus-support1

> Third, this isn’t the Spanish flu

It is not Spanish flu, but it IS directly comparable in both fatality rate and transmissibility, particularly if the health care systems get overwhelmed.

Flu does indeed appear to be much easier to transmit, but Spanish flu killed quickly, days, COVID takes longer (maybe 2 weeks to even show) and you are infectious while asymptomatic. From the virus' point of view, it can afford to be harder to transmit, it has much more time to do it.

R0 COVID19 - estimated at >2

R0 Spanish flu - estimates 1.4 - 2.8, mean 2

CFR COVID19 - estimated at around 2.3 overall, <1% with modern healthcare system that isn't overwhelmed, >5% otherwise. Note >2% is category 5 pandemic, like Spanish flu

CRR Spanish flu - estimates vary wildly, 2.5% is often quoted but doesn't add up, I give more credibility to figures like 10% with primitive health care, and 2-4% with good health care (for the time)

IF we can get R0 down and IF our modern health care systems don't get overwhelmed (which they will if R0 stays high - Italy figures are currently 8% fatal and only 10% recovered) it will be much milder than Spanish flu. But only IF.

lupus-support1 profile image
lupus-support1Administrator in reply to Ray46

With respect Ray, you seem to be very agitated, if not distressed. This state compromises your immune system.

My advice remains as previously written. There is a great deal of hysteria and misinformation even on BBC, where a supposed letter from numerous “doctors” were neither virologists nor epidemiologists!

I am not going to debate this with you. My concern is to help you remain as calm as possible by following the advice given by your health authority.

Stop the constant monitoring. Make sure you have a routine every day.

If you are the internet, find things that interest you. Take a course you have never had the time! There are many free courses online.

Phone friends and talk.

Take a walk daily. Exercise to keep fit.

Eat well & get food delivered.

Everyone is in the same position. Feeling helpless is a natural response to this invisible enemy. Your response is normal to feeling personally attacked by an invisible enemy.

If you feel very stressed, talk to your GP.

Finally, I am on your side!

Stay safe & be well!

Ros

KellyInTexas profile image
KellyInTexasAdministrator

nras.org.uk/news/coronaviru...

Borrowed from this great charity.

Very often these patients are on very similar medications as lupus patients.

Like your mother always said- wash your hands!

This is a great time to reconnect with what’s truly important- and maybe even have a bit of extra time to do it!

Markgammon06 profile image
Markgammon06 in reply to KellyInTexas

Thanks

Maisymac profile image
Maisymac

Hi MarkGammon06

if you are in the uk they have released the “vulnerable” conditions List it’s here gov.uk/government/publicati...

No mention directly of autoimmune but if you are on immunosuppressants you are on there. I think the the rule of thumb is if you get the flu jab for medical reasons it’s you.... if in doubt I’d say call your gp or 111.

Stay safe everyone

Ray46 profile image
Ray46 in reply to Maisymac

I think the key bit is the flu jab.

I have been advised to get it by the NHS, every year, since stroke and diagnosis, not sure which event or diagnosis triggered it, but I'd expect this applies to most/all others too.

It makes sense as it piggybacks on a risk assessment that has already been done and the NHS already has the contact lists setup for mass texting/emailing/phoning.

Markgammon06 profile image
Markgammon06 in reply to Maisymac

Thanks

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