#hydroxychloroquineretinopathy

[Brychni]

Maybe this will make people reassess their need to take it for covid19. I'm thinking of starting a #hydroxychloroquinemakesyougoblind on Twitter! Btw. I'm in Wales and been phoning around this morning to see which pharmacies have Zentiva: not a single one so far and the Quinoric is in very short supply, a box or 2 with no more being ordered because they are out of stock.

[helixhelix]

But it is very, very rare. Especially under 5 years/1kg use and I think for Covid they are using it for 6 days....

Still doesn't excuse supplies being hoovered up tho’.

[Brychni in reply to helixhelix]

I know it's rare, but if people are stupid enough to believe hydroxy will cure covid 19 then they will almost certainly buy into the stuff making you go blind. Fingers crossed!

[charisma in reply to Brychni]

People are desperate... scared. There is evidence that chloroquine alleviates COVID-19 symptoms in moderate to severe cases, so no wonder some are stocking up on it. Not right but human behaviour.

But the stuff, or another appropriate drug, would be administered in hospital anyway.. no need to rush out and buy it.

[Brychni in reply to charisma]

As hydroxy is not an immune depressant, there isn't an alternative especially for people with lupus - and there is no hard evidence that it works for covid 19. It isn't so much desperation as false hope put about by a charlatan.

[Brychni in reply to Brychni]

sorry *suppressant* not depressant!!

[charisma in reply to Brychni]

There is evidence... same for other drugs but all in trial stage, and certainly not to cure COVID-19 but to treat the symptoms it induces in moderate to severe cases. Those people are experiencing an immense reaction from their immune systems in an attempt to get rid of the virus. That is why some drugs used for autoimmune disease are helping those cases.

There are drugs other than HCQ to treat symptoms of Lupus but again, it depends on each person’s response.

None of that stops some people grasping at anything to help them get through. Sad.

[Fruitandnutcase in reply to charisma]

Yes thereprobably are other drugs but I imagine you would have to have your rheumatologist prescribe them for you and if you can’t get an appointment howwill that work?

[charisma in reply to Fruitandnutcase]

Of course. It is a horrible situation currently, for everyone.

No idea if I will get my blood test due a week on Tuesday; needed as four weeks point on MTX. Also no review after drug infusions, disease not controlled, had three flares..

But the worst peak of incubating COVID-19 cases should happen in the next two weeks.

If lockdown is having the desired effect, there might be an ease up for a while. We can but struggle on and use common sense eg if no blood test and no review, I just won’t carry on for now with Metoject Pens even if available.

[Brychni in reply to charisma]

I hear what you're saying but it's not conclusive evidence. I really feel now that my 'undifferentiated inflammatory arthritis' diagnosis means I just don't know enough now about my condition whatever that is. I understand that hdroxy was prescribed as a 'first step', process of elimination but if I can't have that will I be out on something stronger before really getting to the bottom of it? It's like flapping about in the dark.

[charisma in reply to Brychni]

No not conclusive yet but the drugs being tested were approved and used in China, Japan and S Korea. They saved lives by reducing reactions.

I hope the vaccine will soon be ready, being worked on by scientists around the globe. That would be much better than chancing getting infected.

[charisma in reply to Brychni]

Sorry sent before finished.

It is a very bad time to be coping with a relatively vague diagnosis like yours. I hope you can make it through with current medication or have a number to call to voice your concerns. I think quite a few of us might feel left in the lurch, temporarily unsupported.

[Fruitandnutcase in reply to Brychni]

Well look at that American guy who killed himself by drinking fish tank cleaner because he thought it was hydroxychloroquine!

[charisma in reply to Fruitandnutcase]

Poor soul. I’d not heard of that. Pity he never checked if it was ok first. 😢

[Brychni in reply to charisma]

I think it was an elderly couple. They had heard Trump talking about it.

[charisma in reply to Brychni]

Yes, just found it. In Arizona 4 days ago.

[JFlay]

Funnily enough (or not) I picked up my prescription today and it was 2 boxes of Zentiva... never had that brand before!

[Brychni in reply to JFlay]

Apparently Zentiva is much gentler than Quinoric which many people say they can't tolerate. What do you normally have?

[JFlay in reply to Brychni]

I'm not sure, generic ones, sometimes the tablets are yellow and sometimes they are white. The white ones are supposed to be film coated but taste very bitter, best taken with a cup of milk.

[Brychni in reply to JFlay]

Do you ever have any problems?

[JFlay in reply to Brychni]

Wind ! but I can live with that 😂

[Brychni in reply to JFlay]

😉 me too!

[Brychni in reply to JFlay]

Forgot to say Zentiva this is what I have and when I rang round the pharmacies they only had Quinoric.