Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Covid

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

What dose of Hydroxychloroquine for NHS trial

19 replies

Japanese987 · 21/05/2020 21:44

I wondered what dose they are planning to give the NHS workers being offered it as part of the trial announced. Also for what duration and with what monitoring regarding eye checks, bloods etc if anyone knows. Are those already using it for lupus/RA etc still finding it readily available?
Thanks.

OP posts:
mumwon · 21/05/2020 22:01

it will be a blind trial so some will get it some wont - from the sounds of things they are testing everything - I assume you aren't thinking of trying it out yourself? Please don't -

Amyh811 · 21/05/2020 22:11

You don’t need Regular bloods for hydroxichloroquine, only bloods for inflammation. I have a yearly eye test to check for any issues caused from the drug. I take the maximum dosage. Since Donald trump started talking about it, I can only get the generic tablet and not hydroxichloroquine itself. Definitely doesn’t keep my pain at bay as well and upsets the stomach. I also had to wait 2 weeks for my last prescription.

Cocolapew · 21/05/2020 22:13

I had no problems getting it a few weeks ago but I've heard of some people struggling to get it.

Japanese987 · 21/05/2020 22:38

Yes I am aware it will be a blind trial.

I have taken 400mg a day for last maybe 8 years. Luckily I don't get side effects and certainly my stomach is fine on it. I always have bloods done each 6 months but maybe that is for other meds too. I get eye checks at hospital too but only every 5 years in addition to annual opticians.

Hoping my usual brand will be available. Is the generic tablet any different? Is ease of swallowing etc the same? Presumably NHS wont be offered more than 400mg a day?

Cocolapew - was that people new to the drug or long term users
struggling to get it?

OP posts:
itsasmallworldafterall · 21/05/2020 22:55

The dose was 500mg for adults over 50kg in a study in China back in March, so possibly something similar?

Lostnameperson · 21/05/2020 22:59

Info here:

clinicaltrials.gov/ct2/show/NCT04303507

Lostnameperson · 21/05/2020 23:00

“ The participant will be randomised in Asia to receive either chloroquine or placebo (1:1 randomisation) or in European and African sites, to receive hydroxychloroquine or placebo (1:1 randomisation). A loading dose of 10mg base/kg (four 155mg tablets for a 60kg subject), followed by 155 mg daily (250mg chloroquine phosphate salt/ 200mg hydroxychloroquine sulphate) will be taken for 90 days.”

Cocolapew · 21/05/2020 23:05

Long term users, it was in Ireland not the UK.

Japanese987 · 21/05/2020 23:06

Thanks. Will be interesting re the side effects if they don't know if they have placebo or not. Anyone know about the supply issue for long term users/generic brands. thanks

OP posts:
CoffeeDay · 21/05/2020 23:27

A long-term dose is usually 400mg Plaquenil per day (2 tablets). I take 200mg as my symptoms are stable. Contrary to news reports, HCQ is actually fairly safe. I had no side effects when starting it, taken it every day for 11 years and throughout pregnancy as well, with regular checkups of course. It has almost no contraindications with other medications so it's fine to take with painkillers, anti-depressants/benzos, hormonal pills, anti-biotics etc.

HCQ can cause serious side effects in small number of people so complete bloodwork every 6 months is mandatory. For people with autoimmune disease, going to the doctor or hospital is a normal part of life since there are usually ongoing health issues to discuss anyway. I think the government are worried that "normal" people who are just taking it for covid prevention will drop all the blood & eye tests and that's when severe complications could occur.

It would be interesting if they conducted a widespread study on patients already on HCQ to see if the rate of covid is less than the typical population. Though most people taking HCQ already have relatively serious underlying conditions and may be on other meds as well so it would be tricky to control for those factors.

I had a panic at the start of lockdown but managed to get the last box of Plaq after visiting several pharmacies. HCQ was listed as "not available for order" in their system, though one pharmacy kept my prescription and said they'll get in touch. Surprisingly they actually got the medication last week (delay of 8+ weeks?) so it seems stocks are slowly coming back.

Cocolapew · 21/05/2020 23:32

I've never actually had Plaquenil, I've only ever had generic tablets.

HerRoyalNotness · 21/05/2020 23:34

I’m in 300mg and have eye tests every 6 mths and about the same for bloods. I had one refill left on my prescription and the pharmacy refused to refill, I had to have a televisit with my dr to get it pushed through and she only did it for my next 90 days.

I can’t understand why there would be a shortage, it isn’t as if you can just go get it and no one should be prescribing it unless for an existing health issue that it is used for?!

Japanese987 · 21/05/2020 23:43

I managed to get prescription a month ago. Due to order again next week so will see availability. Agree it will be hard to study patients already on the drug due to their health conditions though maybe rheumatologists have seen some differences in their patients on this compared to those not. Does anyone know? I will ask my rheumatologist next week.

OP posts:
bigfatfeet · 22/05/2020 08:12

I picked up my prescription last week and was fine - I usually get the generic version which is horribly bitter but have never noticed any difference in effectiveness between brands.

CherryPavlova · 22/05/2020 08:22

I take 200mg regularly but also take Azythromycin regularly.
When I contracted the virus I was advised to double the dosage of hydroxychloroquine and move Azythromycin to daily.

I did that for a fortnight.

I built up a small stockpile before lockdown as I knew shortages were likely, after early indications. I’ve not tried to reorder now but might put that on my to do list today. I had early abdominal side effects when I started taking them about five years ago but they settled quickly. I am very photosensitive due to it though.

mumwon · 22/05/2020 08:32

are any of you diabetic? or have high bp -I believe that was contraindicative?

MRex · 22/05/2020 09:09

I took chloroquine as anti-malarial many years ago and turned a bit yellow and vomity after some weeks because the build-up in my body was too much. Just wait and let scientists figure out what's needed, if something will protect you then you'll find out.

Japanese987 · 22/05/2020 09:36

MRex - this post was triggered by my concerns that the drug would be in short supply to those who already rely on it to cope with serious health issues day to day not to try to obtain it illegally in case it helps covid!

OP posts:
MRex · 22/05/2020 09:44

Ah sorry, failure to read properly. Can you ask for your prescription a bit early each month to build up a buffer? I take other drugs, but always get them 1 month ahead of time so if there were ever an issue I'll have time to track them down. It's taken me years, but DH thankfully finally started to do the same with his inhalers late last year, which was a relief when he had to wait a week as the pharmacy ran short in March.

New posts on this thread. Refresh page