Hydroxychloroquine 🦠: I’ve been taking... - LUPUS UK


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Hydroxychloroquine 🦠

Melaxx profile image

I’ve been taking hydroxychloroquine for 20 years , was the drug that literally safe my life all those years ago and , now the medicine world think it can help ppl with the Covid19 virus .

What does it mean for the people who already take this drug , are we protected ? Wishful thinking lol


28 Replies

Hi Melaxx,

We don't have enough information to say at the moment. There are a lot of trials going on to test its role in treating COVID-19 and it is indicated that it could be a prophylactic drug as well as a treatment for infected individuals. Further trials are needed to confirm the most effective dose and the exact impact it has.

Boudica1 profile image
Boudica1 in reply to Paul_Howard

Just had a look at the USA based news and it does appear to be a drug that they have decided to use and have put it on the prescription list.


in reply to Paul_Howard

At least my daily dose of hydroxochloroquine may not weaken immune system as I had wondered about ?

I have been on it over four years.

Paul_Howard profile image
Paul_HowardPartner in reply to

That's right. Hydroxychloroquine isn't an immunosuppressant so it shouldn't affect your body's ability to fight off infections.

in reply to Paul_Howard

Thank you . Also thankful for Lupus UK and access for support.

Sekka profile image
Sekka in reply to

More than 10yrs for me and recently had it increased to 400mg day because of Sjogrens flare.

Eyes are well looked after and so far so good!

Yay! Hope it's true!

I think the dose increase is helping too.

Sunphoenix profile image
Sunphoenix in reply to Sekka

I’m due to increase my hydroxycholoquine to 400 mg daily from tomorrow for a flare of lupus profundus. I’m a bit anxious about increasing the dose. I have been on 200mg daily for almost 14 years. Should I look for any symptoms with the increase? Thanks.

Sekka profile image
Sekka in reply to Sunphoenix

I'm finding the increased dose to be helpful and there doesn't seem to be any noticeable side effects. I was advised to take with food which is my normal routine at breakfast anyway.

I did feel a little anxious like you but don't worry it will be fine! Let me know!

Tinkytink profile image
Tinkytink in reply to Sunphoenix

ive been on 400mg daily since I started last year. I did feel a little digestive upset ad nausea, and it took around four months to work, but other than that I am much much better. I was given an anti nausea tablet that did the trick, but after a few weeks I didnt need it

miccika1 profile image
miccika1 in reply to

Hydroxycloroqinine is an immunomodulator not immunosupressant

It seems pres., Trump has said that Hydroxychloroquine going on prescription for Covid19 in the USA.

Not sure if that is true and if so if it would affect those of us who are already on it.

miccika1 profile image
miccika1 in reply to Boudica1

You can't trust anything Trump says.having said this i suggest you take extra supplies for yourself if ypu can. I currently have three mo supply which is max i can get

Boudica1 profile image
Boudica1 in reply to miccika1

Mine are prescribed by the doctors at the hospital and I can only get them at the hospital pharmacy. Also they only prescribe 3 months at a time if it looks like the prescription is not enough to get through to the next appointment I can ring them and get some more to get me through.

In some respects I have been lucky as some of those who are prescribed by their GPs have at times had problems with supply.

Just waiting for the next appointment in two weeks to see what they are doing regarding treatment.

Take care and keep well.


Shame on you miccika1.

This person has never done anything wrong to you and remember he has done many great things for his country. This is a time to come together and not divide.

in reply to sircharles41

Thank you! I’m having a hard time holding my tongue with all the Trump bashing. I stand by my president, so thank you so very much!

Whatever happens, further research into this can only further help Lupus patients. Best wishes Kevin

All evidence is still anadotal but when benefit might outweigh risk in a last resort case in the us for the drug to be covered by insurance it can not be used off label. The script issuing for covid19 will force the insurance companies to pay for its use even though it has not passed studies and FDA approval yet.

Boudica1 profile image
Boudica1 in reply to Roarah

Does it mean that those who don't have private health insurance or can't afford it will still be able to get it. I'm in the UK so don't understand how the system works in America other than at times it seems the least well of struggle and some have been bankrupt because they can't afford it or the insurance stops.


Sekka profile image
Sekka in reply to Boudica1

The U.S. system is hard to follow for us. You are in U.K.? I'm in Australia so different to both of you.

Most things seem to work here quite well thankfully!

Good luck and stay well everyone! 🤞

Boudica1 profile image
Boudica1 in reply to Sekka

Yes living in the UK so it's interesting to hear from others around the world on how this work for them. Yes we pay NI an extra tax on our income but that covers other things like state pension, benefits for those who need it as well as the medical side of things. So that everyone has the service they need. We have the choice to pay for extra health care if we can afford it but in a emergency you still go to a NHS hospital A&E department and treated exactly the same by the same staff.

To be honest here the only thing you can say for private health insurance is you can be seen quicker or though for some things it's to see the same doctors and can be seen by some people as que jumping especially as a lot are seen at the same hospital.

But if they can afford to do that so be it.


Sekka profile image
Sekka in reply to Boudica1

Thanks for that explanation. It seems that, in varying ways, we will all be looked after!

Take care and be safe. 😊

Roarah profile image
Roarah in reply to Boudica1

No one can be denied health care regardless of ability to pay. I had a massive stroke while on holiday in Florida I could not speak and was transported alone to the hospital I was treated before they even knew my name and no one ever asked how I would pay. I only gave my insurance info days later.

Bills can be negotiated, i.e. Sliding scale, state aide is available to middle class and Medicaid is available to our lowest earners and Medicare to our above 65. It is not a perfect system, but none are.

In the states we have about 15 percent uninsured but in many countries like in Canada there are 15 percent without doctors the issue is the same really. Everywhere it seems fifteen percent of the population lacks good healthcare :(

Edited to point out that when we lived in England we paid thirty percent more in taxes on our salaries. Our medical expenses with deductible and premiums is less than ten percent of our salaries. In actuality we paid more for health care in the uk.

lowraind profile image
lowraind in reply to Roarah

For those on the US, if you do not have prescription insurance, or, if your insurance does not cover it, try Good RX or other such companies. Has made a difference from my paying $143 per refill to $34.

Sekka profile image
Sekka in reply to Roarah

That was all very interesting thankyou!

With me living in Australia it's good to know how other countries fare!

Really hoping hydroxy treats this. Since I read the news that this drug is working well at fighting the virus, it has really settled my anxiety levels lol. Here’s hoping that this med so widely used amongst us lupies, could be the saviour for us all 🙏🏻

Just read that in Seattle there will be testing done for the hydroxycloroqine. geekwire.com/2020/uw-treati...

Looks promising, and that's great as long as we dont get into shortages. I was once off of it for a week or so and had a really bad return of symptoms...

Boudica1 profile image
Boudica1 in reply to miccika1

They tried to reduce mine from 400 to 200 a day and everything plus more came back big time and I ended up really ill so had to go back up. Trying to reduce me again to reduce me again, it's not been as bad this time but it seems the kidneys are playing up not sure why so having to have a CT scan with contrast to see if it's stones.

Keep safe and well.


Ok guys, this us exactly what I was afraid off: oklahoman.com/article/56582...

How do we ensure there us enough for us when random people are snatching hydroxycloroqine for covid that's not even fully veted ti help with covid. I bet they will be reselling it at a premium.

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