COVID-19 and UK Hydroxychloroquine Supply - LUPUS UK

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COVID-19 and UK Hydroxychloroquine Supply

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK
25 Replies

Hi everyone,

There has been a lot of media attention about hydroxychloroquine as a potential treatment for the coronavirus (COVID_19).

A few people with lupus have notified us about difficulty in getting this medication from their pharmacist.

Here is an update about what we know right now and the action LUPUS UK is taking to ensure a stable supply for people with lupus and other rheumatologic conditions.

lupusuk.org.uk/covid19-hydr...

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Paul_Howard
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25 Replies
CarolMcl profile image
CarolMcl

Thanks Paul

Kevin53 profile image
Kevin53

Thanks Paul. Best wishes Kevin

PMRpro profile image
PMRpro

In a related item: 2 people are reported to have died after taking chloroquine phosphate of the sort used to clean fishtanks because Trump kept referring to just "chloroquine" as being "a real game changer" in the Covid19 situation.

It isn't the same thing at all!!!!

But China has reopened manufacturing of the drug after a 15 year break - they are obviously convinced it will be approved and are not relying on current stocks.

Kevin53 profile image
Kevin53 in reply to PMRpro

Truly amazing and sad. The sulphates and the phosphates!!

overnighthearingloss profile image
overnighthearingloss in reply to Kevin53

Can you expand on this a bit please. I have not been following the story.

Kevin53 profile image
Kevin53 in reply to overnighthearingloss

The sky news link explains the background

overnighthearingloss profile image
overnighthearingloss in reply to Kevin53

You mentioned the sulphates and the phosphates. This wasn't specifically referenced hence my confusion.

Kevin53 profile image
Kevin53 in reply to overnighthearingloss

Apologies. I was just trying to highlight the dangers when folk see chemical names on other products such as Fish tank fungal cleaners and self medicate. In the human drug world it’s hydroxychloroquine sulphate and chloroquine phosphate! Best wishes Kevin

MEGS53 profile image
MEGS53 in reply to PMRpro

OMG, this is truly awful. I'm shocked.

I know Trump doesn't understand chemistry, but who on earth sold this to the people? Or did they just buy it off the shelf - in America(?) - to supposedly clean their fish tanks?

PMRpro profile image
PMRpro in reply to MEGS53

They'd had it on the shelf for ages having previously had fish. Saw it and thought "chloroquine - that's what Trump was on about"

And he is going on about it as if it were his idea and it is a cure - looking promising but there is a lot of work to do yet.

MEGS53 profile image
MEGS53 in reply to PMRpro

Oh noooooo! Can Trump be brought up for manslaughter, I wonder??

'looking promising but there is a lot of work to do yet'...…..the man really is an idiot (sorry if this offends anyone) and a very dangerous idiot at that. Will he ever learn? I doubt it somehow, the truly arrogant never do.

PMRpro profile image
PMRpro in reply to MEGS53

I thought they had got through to him but he's losing it again judging by last night's press statement/ramble. "America will be open again in a couple of weeks, people were talking of June/July"

MEGS53 profile image
MEGS53 in reply to PMRpro

Maybe they can have him committed to a MH institute for the overall safety of the country...…...

(my personal viewpoint, I don't want to offend anyone).

maggielee profile image
maggielee

Paul was going to write

Thismorning@itv.com

Bob Geldof was on with Lorraine & Piers Morgan this am. just at end of programme about how chloroquine should be given out the coronavirus patients etc...did say they on to explain more about it....

Very frustrating to watch as he had idea of the consequences of his statement nor the side effects of chloroquine hydroxy (this no teen but a Sir)....

At least doctors here have more control on prescribing it...and are more cautious...ml

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to maggielee

Hi maggielee ,

I heard about that. It is frustrating that people with no knowledge or expertise are given an opportunity to discuss matters like this. We've had more calls coming in today from the general public asking how they can get the medication - it's just wasting our time!

CarolMcl profile image
CarolMcl in reply to Paul_Howard

Omg!!! Speachless

PMRpro profile image
PMRpro in reply to Paul_Howard

Could you have a onhold message saying it isn't a cure/preventative and you cannot help??

Typical though isn't it - get someone who knows sod all about it to spout on breakfast TV now that's all people are doing instead of rushing out to work.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to PMRpro

Hi PMRpro ,

Our helpline isn't as technologically advanced as that unfortunately. It is essentially just a home phone but with four lines. There hasn't been an excessive amount of calls about it, but we are very busy with important enquiries from people with lupus at the moment and don't need anything else on top.

PMRpro profile image
PMRpro in reply to Paul_Howard

Well quite - I can't believe our forum, I'm on 9am until 9pm, non-stop. And you wouldn't believe some of the questions - except I know you would ...

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to PMRpro

Take care of yourself PMRpro ! We're at the beginning of what looks like a long period of uncertainty and disruption. You need to look after yourself so you can help others.

PMRpro profile image
PMRpro in reply to Paul_Howard

Doing my best - been on lockdown here for over 2 weeks now! Not much else to do ...

Kevin53 profile image
Kevin53 in reply to PMRpro

Many thanks. Best wishes Kevin

maggielee profile image
maggielee in reply to Paul_Howard

Sent an email with some of the excellent links posted by my fellow HU contributors & who I learn so much from.. Also, added links to Lupus UK...

Hope they highlight soon..

Do keep safe...ml😀

happytulip profile image
happytulip in reply to Paul_Howard

Can maggielee or Paul_Howard make an offcom complaint? I didn't see it myself? It might have more clout coming from a registered charity?

loopy-lou profile image
loopy-lou

Thank you Paul for keeping us up to date. Much appreciated.

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