Stupid question: since the government made a call for people to trial HCQ for Covid..is anyone tracking SLE patients on it who have Covid?🤪

[eekt]

😖🥴😵...I know, I'm brain-fogged, of course they are..

...and here is one survey, the European Patient Registry! Global!

jarproject.org/covid

Thanks to Brussels ! xxx

Stay very safe xxx

[Hidden]

I was wondering the same eek. Not just ones on hydroxychloroquine, but all Lupus patience, UCTD, etc. it would be interesting to know. Good question. I’m glad you asked.

[eekt in reply to Hidden]

A sanity check, thank you Brooksidecourt, autoimmuners could be the control patients since many have been on HCQ for years if not decades...time to set up a Twitter account and put the question to our Health Whatsit an' all, eek...any Twitterers out there? xxx

[Treetop33 in reply to eekt]

I'm on Twitter.

[eekt in reply to Treetop33]

Go for it! Matt Hancock, the Chief Medical Officer, BBC health correspondents an' all...statistically, of the ~40,000 with Covid, about 40 will have SLE, maybe 3,000 with RA (not sure how many folks with RA are on HCQ)...

Tweet away! Contribute to the science! xxx

[Treetop33 in reply to eekt]

I don't think they run their own accounts. I need a Tweeting rheumy.

[suzannah16]

nice pic, is that near you? are your trees in flower already?

[eekt in reply to suzannah16]

It's the old jail up the road, eminently suitable for a Covid hospital with its many 8m2 cells divided by two foot stone walls, in wings (for female and male, as it was then)...handy since the cottage hospital was closed

The pic's from a couple of years back in May, it's a short spring/summer season here... there are daffodils in bloom but not much else has awakened from the winter slumber..me included

Stay safe and well ~ish xxx

[suzannah16 in reply to eekt]

your jail looks better than ours, ours was turned in to a public loo and not half as pretty as yours

[eekt in reply to suzannah16]

I'd move in any day...it's empty and now tourist visits have stopped, it's closed... but it could be a valuable resource...belongs to the council and they don't see it's potential, Covid or otherwise

The old jail (hm, for our American friends, that means 17th century) is still intact, a hole in ground or bell dungeon, as Bothwell experienced in Denmark.....

All our public toilets are closed...with Stay Home notices xxx

[suzannah16 in reply to eekt]

B&B

[eekt in reply to suzannah16]

Yup, that's what Bothwell had for several years in his dungeon, though he had to lick the walls for water...remarkable constitution, it was a couple of years before he went insane! xxx

[Lupiknits]

Covid-19 European Registry is tracking some of us. As far as I can tell, not just Lupus and hydroxy etc, but just to gather info on the usual old lags. No offence meant by “old lags”: your jail photo inspired me.

I can’t find the link, but it was on here somewhere. I’ve filled in my 2nd week’s report.

Not sure to what use they will put the data, but I’m reporting in x

[eekt in reply to Lupiknits]

ooooh, that was in a link in a post somewhere, the European Registry...can you say where it is to sign up? 'Old lag'...well, that's better than I've been thought of by some doctors LOL! xxxx

[Hidden in reply to eekt]

🤣😆😂

[happytulip]

Beautiful picture. The light on the walls and trees is stunning. X

[Hidden in reply to happytulip]

👍

[eekt in reply to happytulip]

It was on a glorious walk at daybreak and a very precious memory. Thank you! xxx

[Kevin53]

My understanding is that Rheumatologists around the world are using their knowledge in the fight against COVID19. Best wishes Kevin

[Brussels]

Yes! There is the COVID 19 Global Rheumatology Alliance which has a physician and patient registry. They have released some data, including patients on HCQ.

As a patient you can register in the European registry, link is here

jarproject.org/covid

[Horsewhisper in reply to Brussels]

Just completed it now

[eekt in reply to Horsewhisper]

Good to have something to do in the wee hours! Stay safe! xxx

[Horsewhisper in reply to eekt]

On steroids, couldnt sleep, thought I’d do something useful with my time! We’re you up before the marks too?!

[Horsewhisper in reply to Horsewhisper]

*larks - sorry totally zonked now!

[eekt in reply to Horsewhisper]

sleeplessness is a curse, hope you can taper down very soon xxx

[eekt in reply to Horsewhisper]

I've been waking at daybreak, to the dawn chorus, a little earlier every day...a beautiful crystal clear sky first thing, first time in an eon...here's to the small things! Presume your daily exercise is behind those velvety ears? xxx

[Horsewhisper in reply to eekt]

Yes best time of the day is just as the birds start tweeting and the sky starts to change. Would prefer to see the inside of my eyelids though! My daughter is riding ol’ velvet ears around the fields at the mo as I can’t tolerate a riding hat, have just been diagnosed with a GCA and have v painful head. Will put up a post later as have a few q’s to ask as in a bit of a quandary (and a bit of shock!) xxx

[eekt in reply to Horsewhisper]

Oh my goodness, that sounds extremely painful...please do share when you feel up to it. Trying times. Snuggle up for a siesta, stay safe and sound xxxx

[eekt in reply to Brussels]

Thank you very much! Done! xxx

[Lupiknits in reply to Brussels]

Thanks for the link. Fuzzy brain couldn’t find it x

[eekt in reply to Lupiknits]

Now there's a positive from Covid-19 - a global registry for autoimmune patients....crowdsourced data as a basis for research HOORAY!...and what a long, long list of conditions included, with of course an option for 'other'

557 folk have signed up, hope millions follow!

Researchers in Spain published a 'how to set up a registry' open-access paper, after setting up the Spanish one, but the UK didn't follow suit...now we all have a chance to contribute to the science!

Stay safe, has your fever returned at all? xxxx

[Lupiknits in reply to eekt]

I think the registry is great because it does allow for pick n mix conditions

[eekt in reply to Lupiknits]

You're allowed a selection of up to five in one bag! xxx

PS my food drop arrived...with only one thing out of stock....BUTTER BEANS?!? What is the world coming to?.. xxx

[suzannah16 in reply to eekt]

still no butter beans? I would try and order you some here but then I wouldn't be able to post them

[eekt in reply to suzannah16]

Thank you! My mum used to have a large pack of dried ones for the broth...didn't think to look them up...maybe there's a blackmarket dealer in pulses on the dark web! xxx

[Hidden in reply to eekt]

🤣😂😅

[thestorm]

Very interesting question, and what a beautiful photo eekt. Fitting photo, as SLE, HCQ, patients, we could be the gatekeepers. To a realm undiscovered, and coveted by us.... Let the trials begin, may they bring much needed relief to the whole world.. Lovely tree blossoms, very cheerful with color. HCQ, could bring some brightness.. Picture worth a thousand words.. Thank you for sharing the beauty, and great question. Be well be safe, and all my peace, and blessings to you and yours eekt. thestormy sunshine

[eekt in reply to thestorm]

Oh storm, you've added a whole new layer of meaning to the photo, which already means so much to me!

SLE HCQ patients as the gatekeepers! Like! Like! Like!

Stay safe storm xxx

[thestorm in reply to eekt]

💗💙💚💛🤎🧡🤍💖🤩🤩🤩🤗🤗🤗💖💖💖💖💖💖💖💖💖💖💖💖💖💖

[eekt in reply to thestorm]

And the same back to you, lovely storm! xxxx

[Treetop33]

I was wondering about the prevarication over hydroxy as a treatment, and wondered if it was because it takes different lengths of time to work in us - anything from a few days to a few months.

I think I've had Covid/still have it because the bugger keeps on 'coming back' - although generally on an upward trajectory.

Symptoms - headache, exhaustion, chest congestion and pain in chest and upper back (fluid in lungs). Temptation to cough but I know better. Stomach cramps and the rest. No fever but did get hot flashes. Been going on for four weeks now. Partner had all that and breathlessness. Kept going because anyway it doesn't do to lie down when your lungs are fluidy. Think we had a mild case.

[eekt in reply to Treetop33]

Yes, it can take months to build up in the tissue...one research paper proposed 500mg/day as the optimal dose for Covid, eek

Hope you keep on the upward trajectory, seems people are reporting ongoing symptoms with the b*gger (👍 good terminology, not least the PM! )

[Treetop33 in reply to eekt]

Thanks!

It feels like a really serious thing, even when mild. I remember having a weird coughing illness 12 years ago and it took two years for my lungs to recover.

I found heat, steam, deep breathing exercises, fresh air, walking around and vics all help. Also been puffing away at the ventolin.

Wish I could get tested though!

[eekt in reply to Treetop33]

Ocado bought 100,000 test kits, but is not saying where from!

bbc.co.uk/news/uk-england-l...

There's an IgG/IgM test available from a Northern Irish company for HCP's:

"We've not been approached directly by the government or Public Health England or any of the other public health agencies of the four nations. If we were approached we would be happy to submit our tests for validation. We think that's a good thing,"

biopanda.co.uk/php/products...

Good tips on dealing with chestiness! Thank you xxx

[Lupiknits in reply to eekt]

Ocado shouldn’t really do this.

I have a conflict of interest though. Ocado has just let me “in” and I managed a delivery for next Weds.

[eekt in reply to Lupiknits]

😉 Ocado did offer to share them with the NHS, but not the source! Congratulations on your slot, that's very soon...watch out, there's a run on butter beans... xxx

[Lupiknits in reply to eekt]

Butter beans are welcome to run as far as they like from me.

School dinners and you must clear your plate 🙃

[eekt in reply to Lupiknits]

They take me back to my childhood and a warming bowl of Scotch broth on a cold winter's day (one coal fire to heat the whole house)...though I eat them in Turkish/Polish way nowadays...in a warm salad with lots of garlic, yum..

It was semolina pudding that made me gag, especially with a large bl**d clot in the middle (aka strawberry jam)! xxx

[Lupiknits in reply to eekt]

My mammy made good soups, with split peas or lentils.

I agree on the semolina, however I liked tapioca (frogspawn?) The nuns were very strict about no jam stirring into such puddings, because they did make it off putting to others. Liked it myself, but best not get on the wrong side of a nun.

[eekt in reply to Lupiknits]

Oh three-day old split pea soup you could stand a spoon in...marvellous! That'll stick to your ribs my dad always said.

LOL I was told nuns are (or were) called 'jammy dodgers' in a certain part of the UK! Reason best not explained! xxx

[Rolychip]

I’ve been on HCQ for about 25 years......and for the first time ever my pharmacist can’t get hold of it. Coincidence or what? Now I have to speak to the surgery to see I am to use instead

[eekt in reply to Rolychip]

Or try a different pharmacy? Some folks here have had luck with Boots I think...check out Paul's update from a couple of days ago...the Zentiva manufacturer is on it!

Stay safe Rolychip! xxx