I was prescribed quinoric 200mg over 3 weeks ago. Struggled everyday taking them as the taste was foul, tried with milk juice etc, no other side effects though. Contacted doctor to plead for a different make and he got me Black Rock. I started that yesterday delighted that they have no horrid taste. Would describe their casing a bit like a nurofen. Anyway, woke up today feeling so sick and nauseous. I had dry toast to quell my stomach, what has happened ??
Anyone else had anything similar.
🤢😔😩
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Montysmum1
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Unfortunately it is not uncommon with Hydroxychloroquine. There are three main brands, I hope my memory is right. Black rock. Quinoric. Zentiva.
I have been taking Hydroxychloroquine for over 6 years now and it took me a long time to work this out.
I can’t take Quinoric or Blackrock. They give me nasty side effects, so bad that I was scared to leave the house......I’m sure you can work that out.
So I discussed this with my GP and my prescription now says “ZENTIVA BRAND ONLY”.
Some GPs will argue there is no difference as the active ingredients are the same in all brands - which is true however, they use different fillers. Lupus patients tend to be sensitive with drugs, food intolerances and allergies, some fillers just don’t agree with us. Many find Quinoric and Blackrock give them side effects that they cannot cope with.
Sometimes GPs and pharmacies say that Zentiva costs more and refuse, and whilst it is the official branded version, they get paid in full for what the prescribe so will get paid back for it.
I’ll try to find the LUPUS UK Guidance on this for you.
One more tip - take it with food or a small glass of milk. Even with Zentiva it can give me a noisy rumbling tummy. This does settle down when you’ve been taking it for a while but not taking it on an empty tummy definitely helps.
My pharmacist has been trying to locate my usual Zentiva brand for a week now. She has sent an email to Zentiva and they had a message on their site saying that they did not have their full staff and they would get back to her. As at today there has been no contact from them. My prescription says NEEDS ZENTIVA, so I'm getting really worried as I can't take quinoric. Pharmacist was sent Black Rock brand which I was going to try but after Montysmum's post I'm not sure. My stomach is very sensitive.
Lupus UK have been working hard to ensure supplies are protected.
They aren’t a aware of any supply chain issues right now. But they do monitor this. So hopefully this will be picked up on Monday.
Unfortunately I have, in the past, had my pharmacy tell me they can’t get it, then when I printed off information from LUPUS UK and took it in for them, they could get it all of a sudden.
Otherwise, shop around. There’s one independent pharmacy here, who has a few lupus patients who prefer ZENTIVA so he keeps a stock on the shelf for them. The bigger pharmacies have lost the personal touch in my opinion and are less likely to help out.
Thanks for that Wendy, I will copy that to the pharmacy. I have to say that the pharmacist than I deal with has been very good in the past on hunting down Zentiva brand for me but if she has no joy then I will try to locate it myself. Thanks again.
I've had the same problem and found the two brands that suit and don't bring me out in a rash. Unfortunately the advent of Covid 19 has led to a restricted supply of Zentiva and got prescribed Quinoric. Take fast in water doesn't taste. So far no rash but I suspect this because I now take antihistamine due to asthma related to allergies. For some reason despite the fact that the Black Rock brand is manufactured in the UK it is hard to get.
My doctor seems to believe that the rash is due to the binding they need on the outer shell that causes the problem. Plaquenil, the original product was never a problem.
Thank you so much Wendy39. I will see how I get on....if I'm still struggling by next weekend I will get back on the phone to my GP.
It's like I said to the doctor in the first place, if I have to be on this medication I have to be able to function properly and not be either gagging or feeling sick all the time. That's no way to live.
In other words if a Pharmacist gets a prescription that says Zentiva only, they have to supply it but they will only be reimbursed the drug tariff price. For independent pharmacists this is not sustainable if they have lots of drugs that are more expensive than the drug tarif price. This explains why many will say they cant get it or its out of stock because they cant afford to supply it.
High Street Pharmacies on the other hand obviously have some sort of deal with the wholesalers - for instance Boots are part of Alliance who are a large wholesaler. Boots dont bat an eye lid if you take the prescription to them. Providing there are no genuine supply issues with ordering they are a better bet.
Black Rock is now owned by Zentiva. I alternate Black Rock and Zentiva daily to make them go further and find if I take them with my main meal I dont get any side effects.
My local Boots told me they could no longer get Zentiva for me, despite my gp specifying it on my prescription. I loathe the taste of Quinoric! Having seen the price difference I can understand why they prefer to say they can’t prescribe it. I now get my medications through their online delivery service so will try with them. It’s such little thing really in the scheme of things but I hate starting ever day with breakfast being ruined!
Boots are awful here. They don’t want to help at all. They’ve got too big and don’t help the individual like they used to.
Try an independent pharmacy. There’s one local here who has a few patients with lupus and he knows they prefer Zentiva, so he keeps it on the shelf for them. Excellent service.
I don’t think LUPUS UK are aware of any supply chain issues right now and I know they’ve been involved in ensuring supplies of Hydroxychloroquine are protected.
I’ve been on it for over 6 years now and faced all of these issues.
My pharmacy told me at one point that the manufacturer wasn’t making it any more. All false information from their supplier - the middleman. I took the info in, with product number and information from LUPUS UK, they got it in stick in days.
These issues keep coming up, which is a shame but if we all share the information and experience we can help each other.
Lupus UK have many relevant articles on Hydroxychloroquine.
Here’s an extract about Hydroxychloroquine and cost. I’ll post a link to the full article too.
If the prescription says ZENTIVA BRAND ONLY or Black Rock only, the pharmacy gets paid in full for that drug, so no financial loss is experienced by them.
“WHAT IF MY PHARMACIST REFUSES TO DISPENSE MY PREFERRED BRAND OF HYDROXYCHLOROQUINE ON THE BASIS OF COST?
We have been informed by some people that their pharmacy is either unable, or refuses to dispense either the Zentiva or Blackrock versions of hydroxychloroquine on the basis that they are more expensive than Quinoric®. We understand that it is correct that Quinoric® is the least expensive, but as these are generic medications the difference in cost per pack is minimal and is considerably cheaper than having to change to alternative medications for lupus if Quinoric® is not tolerated or the cost of additional drugs needed to treat the side-effects and the cost of investigations to assess the side effects.
Typically, if a medicine is prescribed by a generic name (i.e. ‘hydroxychloroquine 200mg’) the pharmacist may dispense any suitable generic or branded product and would be reimbursed at a set price by the NHS according to the Drug Tariff. Pharmacists would generally aim to dispense one of the less expensive products available so that they receive more profit from this tariff and avoid any potential losses.
According to UK Medicines Information (UKMi) if a medicine is prescribed specifically by company name (i.e. ‘hydroxychloroquine sulphate 200mg – Zentiva version only’) then the pharmacist may dispense only the specified brand and is reimbursed for doing so. This reimbursement is not at the set price listed in the Drug Tariff and therefore the pharmacy should not make a loss for dispensing the item. Additional information about prescribing generic medications is available HERE. “
Hello Monthysmum1, I also had issues with both the brands about 6 years back and somehow found a brand which worked wonders but it was sold overseas. I have been travelling to buy it three times a year just to get it. I recently could not purchase it due to covid19 as all flights being cancelled. Imagine someone actually taking a plane to purchase a medication overseas just to get better. Recently someone on this board told me that Zentiva brand has the identical ingredient as the one I purchase overseas. All these years, I was wasting my money and energy. Please ask Zentiva and not only that that Zentiva might be more effective to deal with your symptoms. If I taake any other, I get very very ill. My lupus gets worse. Hope this helps. With love, xL
When I spoke to the GP I mentioned Zentiva and Black Rock as named suppliers that I had heard about on this forum. When I got my new prescription is still just says hydroxychloroquine. No named brand. In my local boots the young girl opened my prescription and said you cannot take this brand, they had put Quinoric in again and she approached the pharmacist who tutted and grabbed it off her. She said are you ok to wait 10 mins till we change this...ofcourse. Then the pharmacist appeared again and gave me Black Rock. There must be a note or something written that the young girl knew I couldn't have the Quinoric but obviously the pharmacist had not read it.....🤔
Hiya Montysmum - yes, they taste disgusting. Take with or after food is on the instructions in the packet, and I get hideous reflux if I break the rules. The thing is - you do get used to them after a few weeks and you also get used to chucking them in and swilling them down at top speed to minimise that hideous taste (can’t stop it completely). And the bottom line is that whether you notice the difference or not they will help your lupus in the long term. Sorry you are suffering with them right now though.
I don’t think LUPUS UK are currently aware of any supply issues with Hydroxychloroquine. In fact they’ve been taking measures to ensure a supply. See the attached document.
Unfortunately I have experienced my pharmacy telling me thru can’t get certain brains but when I’ve printed off documents from lupus UK telling us there isn’t a supply chain issue, they’ve been able to get it.
I’ve had to be quite forceful at times.
The essential thing is to get the brand you require typed on your repeat. So mine says ZENTIVA BRAND ONLY. The pharmacist is then not allowed to give you anything else, they’d be breaching their regulations.
Have you ever asked your GPto out your brand on your prescription?
I explained to my GP the side effects caused by the other versions of Hydroxychloroquine and they amended my script. It says ZENTIVA BRAND ONLY. Then the pharmacy must give you that brand stated, they would be breaching their guidelines if they gave me something else.
Makes no difference, if they haven't got it the pharmacy fob you off. Best is to open the bag before you leave the pharmacy and make them find it. I was self isolating this time and didn't collect the prescription myself. The prescription is for hydroxi, that's what you are given.
If the price of Zentiva is £35.50 that is daylight robbery, it is off licence now.
For anyone having issues getting Zentiva, here’s an extract from this article, with product number for your pharmacy to use.
Plus the full article, for further information.
“If you require the Zentiva version of hydroxychloroquine tablets and your pharmacist has any difficulty obtaining them, the product description is:“HYDROXYCHLOROQUINE SULPHATE (ZENTIVA) 200MG FILM COATED” and the ‘PIP number’ (product code) is 1201730. If for any reason they cannot find the product on their system they can ring the customer service line on 0800 854 431.”
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