CHAT COVID SATURDAY 28TH MARCH.: Let it not be said... - PMRGCAuk

PMRGCAuk
10,983 members19,986 posts

CHAT COVID SATURDAY 28TH MARCH.

Hidden
HiddenModerator

Let it not be said that we don't listen.....warning...normal service will be resumed 😱😉

You wanted some good news....

The WHO has stated it is launching trial testing of 4 potential treatmemts...

medicalnewstoday.com/articl...

The Good News Network reports on elderly care home residents who were able to say hello, with this Doris Day classic, when relatives could not visit face to face.....lots of other stories available.....

goodnewsnetwork.org/watch-s...

Finally, another lot of good news stories when an article in The Guardian suggests Covid 19 is a good time to look for good news...

healthunlocked.com/api/redi...

For those of you who are living in cities or houses without garden...here's a tour of Kew Gardens.

+±++++++++++++++++++++++++++

Please read these before you post a question about covid19 -

healthunlocked.com/pmrgcauk...

PMRpro, YBB & Poopadoopy

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92 Replies
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Chloroquine and hydroxychloroquine are being tested in New York.

Meanwhile, patients taking these drugs for autoimmune conditions like Lupus and RA can't find a supply for treatment of their conditions.

Like masks, gloves, gowns and ventilators, the US doesn't have the resources.

PMRpro
PMRproModerator
in reply to GOOD_GRIEF

Nor, if the truth were told, does anywhere else. Because they got complacent ...

I have to say, I have been enjoying your Govenor's (?) lectures - the figures are fascinating.

GOOD_GRIEF
GOOD_GRIEF
in reply to PMRpro

The figures are...well...let's just say I don't scare easily, but I'm getting really uncomfortable. The figures are terrifying.

Andrew Cuomo is just like his father, Mario, who was governor of New York State a couple of decades ago. He looks and sounds so much like him. He's a typical New Yorker - brash, brave and grounded in reality. He won't be bullied, and he won't back down. He tells the truth, and lavishes credit when credit is due. I'm very grateful we've got the right guy for the job.

Yellowbluebell
YellowbluebellModerator
in reply to GOOD_GRIEF

Its good when someone wont back down to things when they know they are right. xxYBB

Those number are just for New York State.

The US passed the 100k case mark at about 7PM Eastern Daylight Time on Friday.

I am a fan of your Govenor as well. I'm old enough to remember his dad at the helm. And yes, watching the figures climb is daunting and outright scary.

HeronNS
HeronNS
in reply to PMRCanada

Last night when I went to check the worldometer I realized I was actually scared to see what the USA number would be. Someone said early on, I don't remember who it was, might have been an official with WHO or UN or even someone in Taiwan, that they were very worried about the United States. This was when Canada was warned to behave like Taiwan, not Italy when had only a few cases, but we sort of fell between the two extremes

Hunter134
Hunter134
in reply to PMRCanada

The numbers are very scary.We can only pray it slows down.

PMRpro
PMRproModerator
in reply to GOOD_GRIEF

I was thinking of his explanations of relationships between what we have, what we need, what we might be able to have ... So clear - unlike someone else we could mention.

GOOD_GRIEF
GOOD_GRIEF
in reply to PMRpro

Now, now. No political commentary or someone might get upset...

PMRpro
PMRproModerator
in reply to GOOD_GRIEF

I named no names - and BoJo isn't what you would call CLEAR ...

PMRCanada
PMRCanada
in reply to PMRpro

A breath of fresh air. :)

Also British Columbia has finally seen a drop in the rate of new cases. They were the first hotspot in the country.

powerwalk
powerwalk
in reply to HeronNS

Oh really? My son and daughter are living there so thats good to hear. Thank you.

HeronNS
HeronNS
in reply to powerwalk

They did say it was too soon to be "cautiously optimistic" but .... 😏🤞

powerwalk
powerwalk
in reply to HeronNS

I'll take it. ! Xx

Seems I remember reading that China had started a trial with hydroxychloroquine back in early February.

PMRpro
PMRproModerator
in reply to Raven1955

I don't think it was a clinical trial - they have done pilot studies with relatively small numbers and now they have selected the most promising but China doesn't have the numbers of new patients to recruit, hence it is worldwide.

Raven1955
Raven1955
in reply to PMRpro

Makes sense. I read a lot and remember the general topic but the details tend to suffer! lol Thanks!

About 18 months ago I had a battle with my rheumy #2, who put me on hydroxychloroquine because he had it in his head that I had RA, and not PMR. After a short while I just flat quit taking it and we worked out a truce. I looked in the back of my medicine cabinet a few days ago and see that I've still got about 140 200mg capsules of the stuff. I think I won't throw those away...lol.

But don't take them without medical supervision.

Great post. Thank you!

From Friday's New York Times Op-Ed page:

Stop Yelling Out the Window. Just Give Doctors the Masks You’re Hoarding.

Empty gestures of solidarity aren’t going to bring back the gear that has grown legs and walked out of my hospital.

By Joshua Weiner

Dr. Weiner is a transplant surgeon in New York.

March 26, 2020

“Any thoughts?” my father asked me in an email. The subject line read “#Solidarityat8.”

Yes, I have a few thoughts.

As a devoted nonmember of Facebook, Twitter and Instagram, and a conscientious objector to any internet meme or trend since AOL chat rooms, I learned that #Solidarityat8 is a moment of public silence, cheering or clapping at 8 p.m. each night to “show support for health care workers.” It’s a time when the world, or at least the Twitterverse, honors my colleagues and me with a communal offering of thanks.

No need.

I am a health care worker, a transplant surgeon in New York. Those who are about to run into the pandemic without adequate gowns, masks or hand sanitizer do not benefit from a confusing mixture of appreciative noise and not-noise any more than would firefighters about to rush into a fire without gear.

Like many internet movements, the idea is misguided. It is a salve only to those who are already hiding in their dens stocked up for winter. A perfect activity for the internet age, it’s a low-investment, risk-free way to wear the mantle of the moment without owning it. It is noise without action; pontificating about politics without running for office or voting. Consider an example of such empty social media gestures: Of the 17 million people who shared their A.L.S. Ice Bucket Challenge videos, 14.5 million didn’t contribute to the A.L.S. Association or even know there was a cause.

Doctors don’t need any shouting from the windows. We need what’s behind your windows, in your living room, hoarded for an apocalypse that will occur only if we do not have the resources needed to fight this pandemic. If you are isolating yourself, then you do not need an arsenal of defenses. Basic social distancing and hand hygiene are sufficient. Those who don’t have the luxury of isolating, the people you will rely on if you get sick, require that arsenal. Not all of it. But for our good, though really for yours, please contribute your hoarded supplies.

You can’t possibly go through that big bottle of hand sanitizer, but keep it anyway. That second and third bottle, though — please put them to better use. I have not seen a single bottle on my floor at the hospital, and some scavengers have been observed coming to the hospital to fill their home bottles from our supplies. Bring us your extra masks. The critical shortage requires us to use a single mask for multiple patients until it is contaminated or damaged. You do not need five of them to go for a walk. Many of our own stockpiles have grown legs and walked away.

About those boxes of toilet paper: Do you really need that much? How many years of hand soap do you need in your bathroom? Will you go through that many bags of zinc lozenges while sitting unexposed on your couch? The amount of acetaminophen you have hoarded would be toxic if you took half of it.

People in self-isolation do not need an arsenal of defenses.

I propose setting up a service where people who want to show their appreciation for health care workers can safely provide the medical materials from their own homes. They can donate or be reimbursed (but not at price-gouging costs). You can view this as doing your part. Or you can view it as helping to put the resources where they are needed to prevent the pandemic from spreading (in your interest) or to treat you if you get sick (also in your interest). Please do this instead of yelling out your window tonight. Give it a hashtag if you would like.

Doctors will take care of coronavirus patients no matter what happens. Most of us are not resentful of the burden but instead excited to be useful. As the chair of my hospital’s surgery department wrote so eloquently in one of his daily missives: “Remember that our families, friends and neighbors are scared, idle, out of work and feel impotent. Anyone working in health care still enjoys the rapture of action. It’s a privilege!”

We are happy warriors, even if we become victims to the cause. We do not need to be saluted. To the contrary, the ancient gladiator refrain may be more appropriate: “We who are about to die salute you.” We will fight for you because it is in our blood and it is what we trained to do.

But would you please pass the soap?

Joshua Weiner is a transplant surgeon in New York.

Stirring stuff! I hadn’t looked at it like that before. I feel less guilty for forgetting to go outside and clap after reminding all my friends. I haven’t hoarded anything and stealing from a hospital would be like making off with the collection plate in church. People are astonishing in bad ways and good.

I don't agree with him. Most people who went out/stood on balconies/from windows, WERE showing their support. Ordinary people. Not those creeps hoarding/stealing. He makes it sound as if EVERYONE was stealing his stuff. Many were in care homes/, elderly at home, not stealing.

The NHS is in trouble - it has been for years - it's not the people's fault.

Hidden
HiddenModerator
in reply to Constance13

Yes the NHS is in trouble but this was a New York story. About the experience in their hospitals.

However, here in the UK people have stolen loo roll and masks from hospitals. A local food bank was broken into early on. I am not a fan of empty gestures myself. I have no evidence, but even if one hoarder went out and applauded having emptied the supermarket of food or other goods. Empty gesture.

The NHS is in trouble, sold off, underfunded, understocked but having spent LOTS of time in GP surgeries and hospital waiting rooms I can say I appreciate every member of staff that all dealt kindly with me (or professionally ...personalities are personalities). I thank each and everyone when I am face to face. I will always do this for people in the NHS. I won't clap on order like a seal.

While we are at this, thanks to all those who go out once in a while and pick litter, tend public and other flower beds, who normally volunteer to do shopping and visit the homes of the elderly and care homes. Who volunteer in charity shops and charity organisations and who volunteer in hospital charities on within the NHS structures. I have done a little of some of those in the past and appreciate the organisation, hard work and time it takes. The good news....🤔😀

Constance13
Constance13
in reply to Hidden

Why is everyone concentrating on the plebs in this story? There are 500,000 people offering help and they have been put in the same category as those disgusting people. They are doing their very best to support the hospitals and those in need.

Hidden
HiddenModerator
in reply to Constance13

People might personally be helping friends as I have been helped, but despite people volunteering and supermarkets saying they will help, the gov hasn't sent the details of the shielded that need food and meds.

I couldn't get antibiotics that had been prescribed for an infection yesterday. The Dr said I had to start them yesterday as I have diabetes and dmard etc. The pharmacy deliveries had all gone out and I was told it would be Monday at the earliest. My neighbour kindly went and got them. My neighbour has a 6yr old son who is vulnerable. I don't want to ask her for things unless urgent. I have filled in my registering for vulnerable/shielded people.

I really appreciate everyone wanting to help, but within an institution or structure, getting those things in place is a frustrating and time consuming thing. How do they do checks for volunteers. The NHS have turned food away that was made by someone who wanted to help. I REALLY understand why as foodstuff CAN BE dangerous. But I think his business is food and he wanted to do something and used his skills to try. I can't find the story so I may have mispoken. But the point is that organising such volunteer action to deliver food and meds shouldn't just be unpoliced or unchecked even in a crisis. I speak as someone who has worked, qualified and taught community development. I do care who handles my food and meds.

Interesting perspective from the US. Of course , many of the things bought and then kept within the Home may not be allowed for use in the Hospitals for reasons of contamination or because they are inappropriate makes.

The NHS has got a gifting service going on , allowing people to help by donating in a way which ensures that things being sent are what they need and from safe sources , mostly straight from the supplier or business for Cleanliness.

The Hoarded items may well be better suited being sent to Shelters or Charities trying to give supplies to lots of people that they have time to properly check over before they pass them to clients. Or donated to local people via Community Hubs who are having to Self Isolate or have Covid at Home and need supplies there to to cope. Swapping and Sharing us a growing trend , so only the worst Panic Buyers will be hoarding back.

The clap was a good idea , even if it feels a bit uncomfortable when we do it , why ?

It provided a big boost for the Mental Health of all of the people taking part , or watching others do it on the news . Maintaining morale and helping people , including workers in the NHS , is a big part of keeping us all healthy in the weeks ahead .

Watching coverage in the UK on the Nation's Clap , it showed that it involved a lot of positive discussion and joining in with little dances and phone films from NHS Staff members from around the Country . So , it obviously did make them feel supported and gave them a distraction from the Dark Work they saw around them.

Not all things we need supplied in Health Work comes from a Shop , much of what keeps Medical Workers going is support that comes from the Heart.

HiddenThis reply has been deleted
Blearyeyed
Blearyeyed
in reply to Hidden

Yes It made me feel uncomfortable but my OH , a key worker as a teacher , said that although it may not fit me , it was going to help many to do it , and I support anything that can increase our feeling of community at the moment when virus rules are keeping us apart.

HiddenThis reply has been deleted
scats
scats
in reply to Hidden

Similar here but I could hear the rest of the village in the distance.

PMRpro
PMRproModerator
in reply to GOOD_GRIEF

That is actually what I said - don't clap, throw PPE at them.

My daughters and friends in the NHS did go to the door at 8pm in the UK and were very moved that they could hear the support. But it doesn't alter the fact that in many hospitals they don't have gloves and masks or any proper protection.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRpro

But we can’t as individuals throw PPEs at them - or anything else apparently.

Saw on the local news that a local restaurant owner was making ready cooked meals for local hospital staff (so they could microwave at their break (assuming they got one) and delivering to hospital. He was told yesterday by the hospital they could accept them any more! He was devastated.

So what else can do do but clap to show our appreciation....and it’s not patronising.

Slowdown
Slowdown
in reply to GOOD_GRIEF

Fear seems to intensify the reactions of both groups; those who respond with 'the rapture of action' because they are the trained, dedicated and purposeful front line, and the 'scared, idle, out of work' who 'feel impotent' and need some form of visible connection for a few moments with strangers/neighbours as they join in with the only means to hand. Literally.

For the latter group, we can all make a choice. I did clap, but only after waiting to not be first one - goodness, that's so British!

Hidden
HiddenModerator
in reply to Slowdown

😂🤣😂

Hidden
HiddenModerator
in reply to Slowdown

Terribly...Celia johnson

maria40
maria40
in reply to GOOD_GRIEF

I did clap but had second thoughts when I saw our PM clapping after I'd heard the news about the frightening scarcities ; I you should do something not make gestures. Will things change now that he himself and Health Sec are patients? I haven't hoarded and I'm sure I'll get by .

PMRpro
PMRproModerator
in reply to maria40

The questions about them all being tested must be getting through. But have you seen the picture of the two of them, Chris Whitty and Cummings on the stairs? Must have been taken in the last 2 weeks and definitely not 2m apart - what an example ...

maria40
maria40
in reply to PMRpro

No, I didn't see that but was amused to see Cummings fleeing the scene.

PMRpro
PMRproModerator
in reply to maria40

Do you think they refused to test him? Or was he heading rapidly for his place to isolate as a contact?

Hidden
HiddenModerator
in reply to PMRpro

The Witty adverts on TV for keeping safe have taken on new meaning!

PMRpro
PMRproModerator
in reply to Hidden

Haven't seen them!

Hidden
HiddenModerator
in reply to PMRpro

They keep flashing up like a PSAnnouncement.

Hidden
HiddenModerator
in reply to PMRpro

See if this works...

lbc.co.uk/hot-topics/corona...

PMRpro
PMRproModerator
in reply to Hidden

Hahahahahaha - do as I say in a nutshell ;)

Hidden
HiddenModerator
in reply to PMRpro

Yep.

Thanks so much Poops , I think this sort of thing is the perfect antidote to Social Isolation Stress .

It's good to release the valve on the system now and again and release some of the Air of Anxiety.

I wonder if that's what the NHS Directives meant when they said Keep your house well ventilated?!!

A little weekend wellbeing and uplifting distraction will do Us all good ,

Stay Positive and Stay Safe Troops xxx

PMRpro
PMRproModerator
in reply to Blearyeyed

An expert microbiologist on Sky News said that good ventilation would reduce any viral load around.

Blearyeyed
Blearyeyed
in reply to PMRpro

It's actually in the NHS Shielding guidelines , ventilate rooms and sit by a window and get fresh air .

I'm waiting for my OH to dress up as Hattie Jacques and walk around ordering me to fill my lungs while flinging open all the windows

Hidden
HiddenModerator
in reply to Blearyeyed

😂🤣😂

Hidden
HiddenModerator
in reply to PMRpro

I will have to close my attic soon...it is freezing today compared to when the sun is out

Thanks Poops.

When we were first married OH worked at Kew gardens, I spent hours there with our young children. This little film came as such a surprise, out of the blue, and brought back so many memories, I can't tell you. We have both changed so much in the intervening years, me and Kew.

CT-5012
CT-5012
in reply to scats

I loved it too, OH &I had intended to visit Kew this spring... oh well will just have to wait a bit longer.

Hidden
HiddenModerator
in reply to CT-5012

At least you have a taste. There are a lot of virtual tours to art galleries and other public buildings...and... sigh...zoos.

Hidden
HiddenModerator
in reply to scats

You are welcome everyone. Joint effort.

might stay on that prednisone jwatch.org/na51132/2020/03/...

PMRCanada
PMRCanada
in reply to Jan_Noack

Interesting. Thanks for sharing.

Hidden
HiddenModerator
in reply to Jan_Noack

Here I go again...yes interesting indeed. But their comment disclaimer ...

COMMENT

This cohort of COVID-19 cases occurred early in the epidemic and many had elevated inflammatory and coagulation markers associated with poor prognosis in other studies (Lancet 2020 Mar 11; [e-pub]). Although corticosteroids appeared to be beneficial in this cohort, this has not been a consistent finding, and WHO guidelines do not recommend adjunctive corticosteroids outside of a clinical trial.

HeronNS
HeronNS
in reply to Jan_Noack

Except that pred is an immune suppressant and being on a ventilator is an effort to keep a patient alive long enough for their immune system to get up to speed. This is why ppl at a certain dose of pred are in a higher risk group.

Thanks for the "positive" based links. Nice to have in these times of uncertainty and doom.

I found this link/document on a PMR FB group. I've had a phone appointment with my GP this week, and we were discussing if I might receive different, or more extensive direction and guidance from a rheumatologist (compared to what he shared with me as my GP who is overseeing my care - I do not have a rheumy).

england.nhs.uk/coronavirus/...

PMRpro
PMRproModerator
in reply to PMRCanada

It has been up on here a few times too - that was version 1, I wonder if there is an updated version.

Hidden
HiddenModerator
in reply to PMRCanada

I think making sure you follow international guides from countries swamped already may help you train your doctor! Bear in mind some of these documents are still constantly changing. The amount of pred for example has been a bit of a sliding scale!

Rache
Rache
in reply to PMRCanada

Thanks for link, very informative. I’m trying to reduce to below 10mg Prednisilone for the first time, taking it slowly to 9.5mg. 11 to 10 was iffy so can’t rush it. 70th birthday in November, had some lung inflammation after radiotherapy in 2014 which eventually improved with recent scan showing only one area affected. Had slight asthma since 1980s but no symptoms for some time. Difficult to know what category we are in according to current criteria but best to do all we can to avoid infection, irrespective of labels. I’m including myself in the ‘vulnerable’ category.

Hidden
HiddenModerator
in reply to Rache

Put the first part of the address in Google to get up to date versions. They seem to be changing all the time for everything.

PMRpro
PMRproModerator
in reply to Hidden

And that is why a lot of people haven't been contacted yet. I think they should have told all older rheumy patients to stay home and isolate while they concentrated on the working people first.

Just to say a big thank you to all Mods ,Admin and everyone else who spend so much time collecting infomatoin and doing research for us .

We wouldn't be here without you .

Love to you all

xxx

Thank you for going to all this cheer up trouble. Much appreciated! ❤️

Thank you for the pics of Kew. In the eighties we passed it every year going to exhibit at a large fair in Syon park. After 5hours on the road with two young teenagers and a dog, never mind all our stock it meant we were nearly there.

Has anyone had to go to hospital during this time?

Fingers crossed as we have not been out for 3weeks.

OH going to hospital for a full day next week. The lead consultant rang yesterday to tell him the plan. he has to go straight to oncology ward where he will have bloods taken and then wait for results and have chemo. 6hours.

They will also do a full body CT body scan. They will stop chemo for a while as he is very high risk, if ok

I have reluctantly decided not to go as this limits exposure. Do you agree? Jen.

Take care everyone. Thinking of you all in USA as my daughter in law is American and my beautiful granddaughter was born in Colorado.

PMRpro
PMRproModerator
in reply to 5lupins

If your husband is able to get there without your assistance, here you wouldn't be allowed to go with him. Harsh maybe, but perfectly reasonable I think.

5lupins
5lupins
in reply to PMRpro

Not harsh in the circumstances like you say and the team are pulling out all the stops. Excellent care. Son travelling to drop him off and pick him up as unable to drive after chemo. So all is sorted. 😃

Hidden
HiddenModerator
in reply to 5lupins

Hi 5lupins, I will keep my fingers crossed that all goes well. All I can say is if I was a patient and staff I would be worried an extra body was there to take care of and with. But I like being at the hospital by myself ....and i wouldn't expect someone to put themselves on the line. Have you checked you can even go?? That may be first step.then.

5lupins
5lupins
in reply to Hidden

Thanks. Definitely not going and OH will be fine. Nurses very nice and know him. He has his own room and bathroom facilities......... May not want to come home 🤗

Hidden
HiddenModerator
in reply to 5lupins

😂🤣😂

botanic.cam.ac.uk/join-us-f...

Another virtual walk if you are stuck at home. Vx

I heard on the news this morning a man has completed a marathon by running round his garden - only downside was the finish line was made by his son from toilet roll !

Ha, now we know why people needed all that toilet paper! 🤣

Hidden
HiddenModerator
in reply to Slowdown

😂🤣😂

PMRpro
PMRproModerator
in reply to Slowdown

Hope he recycled it ... ;)

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRpro

...after the MARATHON presumably 😳

Thanks for the garden tour this morning.

Thanks for your post Poopadoopy x

Ok when the world opens up again I wish to visit Kew Gardens! Breathtaking! What a way to start my day. Thank you for posting.

I got banned from a forum for suggesting that Hexachlorquine might be effective against Covid-19.

HeronNS
HeronNS
in reply to S11m

Hopefully you didn't suggest that people try this at home?

S11m
S11m
in reply to HeronNS

Hexachloroquine is a prescription drug - so it seems that doctors are prescribing it for COVID-19.

Hidden
HiddenModerator
in reply to S11m

People can get most real or counterfeit drugs online and on the street black market. If people are in fear they will try anything.

HeronNS
HeronNS
in reply to S11m

It may or may not be effective in treating the symptoms, but I hope this would never be prescribed for someone who is not sick enough to be in hospital. Until we know more should really be confined to the clinical testing.

PMRpro
PMRproModerator
in reply to S11m

If they are it is not under approval. It is still in clinical trials and there is neither evidence nor official approval for its use. It would be off-label use and there is no insurance for that.

At present there is no justification for any doctor to prescribe it for Covid19 and it is irresponsible because it is a long-standing component for the management of other disorders, including lupus and supplies are already problematic for them.

Hidden
HiddenModerator
in reply to S11m

I think they were right to do so if you suggested it was effective "against covid 19." A vaccine can offer protection against a virus. Hydroxychloroquine and 3 other existing drugs are basically being trialed as a potential existing drug that may or may not be effective in the treatment of Covid19. When you are dealing with such things at the moment, or any time really semantics and reality matter- the myths and rumours of what might work "against Covid19", may lead to people attempting to buy or take a drug that is vital to other people and dangerous to them.

theguardian.com/world/2020/...

The LSU doctors are launching some experimental trials here in New Orleans as well. Our numbers are ghastly! I've been working in the garden all week. My grocery helper delivered a case of beer yesterday. That will come in handy as I plan to be overdoing it in the yard every day in order to preserve my sanity.

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