I didn't think this would happen to me but I just experienced what many have recently as the dreaded 'we can't get you Zentiva' from the chemist. I was getting it ordered from Boots no problems, they have now joined a centralised POD system and will no longer get it for me. I went to another chemist in town they said they can't get it or more like won't get it for me, their warehouses don't have it. The third one I tried had it in stock but I was told they only get whatever hydroxychloroquine brand that is in the warehouse. They too were reluctant to say if they could order it or even able to order it for me. It's on my prescription to have that specific brand so what do I do? Quinoric makes me sick and blackrock was not an option either to order in. It took an hour phoning round yesterday and that was the last local chemist in town I tried that had it. I've tried an online pharmacy but it kept coming back unable to supply zentiva. I know zentiva have stock so what now? Anyone else finding they're chasing this issue and getting nowhere? I have four more boxes put by at the chemist but that's all they had and can't guarantee to get it again for me. It seems more and more chemists are going to centralised warehouses and they are not buying zentiva (I was advised by our Lupus group chemist that it only costs a £1 more a box which is so small a difference). I must admit I'm pretty tough but it actually got me tearful with the stress yesterday. Honestly what do we do, go to other towns until their supplies dry up? I'm in Wiltshire but I will be making my way gradually to Scotland visiting the chemists inbetween as stocks disappear! Just wanted to make people aware that this issue may be coming to a town near you soon.
Zentiva Hydroxychloroquine: I didn't think this... - LUPUS UK
Zentiva Hydroxychloroquine
Do you have an independent pharmacy at all (i.e. not a chain like Boots)? I could only take Bristol brand when I was on hydroxy and was told all of the chains probably won't get it for me. I use an independent one now and would never go anywhere else.
One by one they are joining this POD system which seems to be a centralised supply through NHS Wiltshire where GPS send the prescriptions and then they despatch to your chemist of choice. The chemist no longer deal with it. They hold a little stock but just get sent whatever drug is in the warehouse. So they buy whatever hydroxy they can get and supply it but its not guaranteed a certain brand. Most of the chemists now cannot ask for a certain brand. Where this leaves patient choice I don't know? Seems like many counties are starting to go the same way. One central warehouse from the gp to chemist. If the warehouse doesn't have a certain brand in stock it seems like they won't order it for you and neither can the chemist. It doesn't bode well for many patients who need a specific brand of medication whatever their illness. Not looking forward to this stress every time I go for medication.
It's ridiculous, isn't it? That was the issue I had - everywhere told me that they were also on the centralised system and the patient couldn't request a certain brand. I told them the one they were going to give me made me break out in lots of mouth ulcers and they said "Well, you'll just have to tolerate it or stop taking it".
As I understood it when you and if you have to come off hydroxy then its on to stronger drugs which presumably cost more. I was hoping someone would have an insight into this but as it stands no one has any answers. I hope the answer you got is not going to become standard for all chemists. What will we do?
Boots did get it for me for over a year they'd order it in but then suddenly they can't choose what to order anymore. Same with the two independents except one who still say they can't guarantee they will order it in for me. They have one warehouse they use and they can't effect what is bought in.
Up to Christmas I was always given Bristol, always gave me indigestion. Then I had a Christmas present, Zentiva. I didn't want to take it incase I didn't get another. There's no nasty taste, side effects. Jan, Feb and March still getting Zentiva. I also use an independent pharmacy, using the same one for over 40 years.
That seems to be the case it's getting more like a chance encounter in your prescription bag rather than guaranteed.
I get mine from a small town in the country. I can take any make but do prefer zentivia, I’ve been very lucky for six months now, zentivia has been in the wee bag 😃. Makes me smile when I see it. I get mine in two month supplies. Due to phone and get some more, hope it’s not a 🥲. Been spoiled for six months now.
I had a funny experience yesterday. I had been told by my regular chemist that they couldn't order zentiva. But by accident an order was sent electronically for it to them, and it appeared in my prescription bag of stuff. Seems like they could get it after all.
Pharmacies are required by law to prescribe what's specified in the prescription. I've had two chemists, one was boots, telling me they didn't want to prescribe it as it was too expensive, but had to do it anyway.
Not sure what's going on. It's the stress of not knowing you can get your medication thats difficult.
My local Boots also said they couldn’t get it any longer a few months ago. I wrote a letter to both my GP and the Pharmacist at Boots explaining that this decision was costing the NHS more money because I, and many others, suffer with gastritis on other brands. This means I have to take Omeprozole, and Gaviscon to combat the gastritis and have had 2 endoscopies to find out what was causing the severe gastritis. Is this cost effective?
Result: My GP has put on his notes that I’ve to be prescribed Zentiva only and the pharmacist told us she’d argued the case with the powers that be at the top of Boots and has managed to obtain 10 packs of Zentiva which she has put my name on for future prescriptions. Luckily I’ve sourced an independant chemist (Davidson’s chemist) in a town 15 miles from here who say they can obtain Zentiva for me at any time. So once the 10 packs at Boots are used up I’ve another source. I hope this helps. Good luck.
Its such a shame we are having to travel further away just to obtain a simple drug which only costs a £1 more and if your doctor puts Zentiva only on the prescription they get fully reimbursed anyway as the gp has requested that brand. What happened to patient choice. I will have the same issue with pilocarpine as one brand gives me a gripey stomach and more and one not as much. I'm not looking forward to going through this rigmarole again for another drug. I have written highlighting this issue as well with my gp but don't expect much feedback. So sorry you have had such problems with another brand. I stopped Bristol labs after one box as I had the issues you have and luckily saw this site where people recommended Zentiva. Fat lot of good it is now if chemists are all changing over to the no ordering in system, you get what's in their warehouse that's it. We have enough to deal with and now it seems another layer of fighting to get what we need rears it head. I won't ask where you live as I may drive up and pinch the Zentiva in Boots🤣
Yes, I find the Bristol brand the worst too yet that is the brand they kept trying to push on me. I also learned about the Zentiva brand on this forum and I’ve been on it for a couple of years now and what a difference it makes. I refuse to go back on any other brand. Although Bristol claim their tablets are coated too it must be VERY thin because the second I popped one on my tongue I could taste the bitterness of the quinine which I never have with Zentiva. Sorry to hear you are going to have the same issue with pilocarpine. The fact we have to fight so hard for a drug we can tolerate puts a whole new meaning on Lupus warriors! 😆 I’m in the south of Scotland, but I’d better not tell you which town!🤣 Take care dg70 and the very best of luck. 🤞 x
This issue is going to be an ongoing drama. I'm in the south west of england so your supply is safe.......for now!😆
Sorry to hear that. I get mine from a fairly local independent pharmacy, he gets it for me , Boots and Lloyds said they only get what's available ( read cheapest) . Hope you can get sorted ❤️
I too have had similar problems with Blackrock Hydroyxchloroquine in the past - and do now. At the moment we know is out of stock to order until May 2023 ( so realistically will probably be later than this). I cannot take Bristol brand following a serious bad reaction and even struggle with Zentiva. In the past five years since I started taking it there have been a few supply issues with Blackrock. This has meant I have had no option but to ring around every pharmacy within a 50+ mile radius. I live in Devon and when I did to finally track some down last time ,had to get lift and travel 45 miles. This has happened a few times now with journeys of between 10 and 45 miles. I always try every single pharmacy (independent and chain). Last week I spent all day and made 32 phone calls to over 20 pharmacies. I eventually located 34 tablets but there are no more. Some had small amounts of Zentiva, Bristol or IPCA (India ). Even though I go to a very helpful pharmacy now (after getting no help in the past even though the brand was specified on the prescription) which is already a few mile away, they don't know what's going to happen . We need some help and support with this in an on going basis. The same issues and problems keep happening. I have been told that nobody ( GP/pharmacist ) has any idea what's going to happen when I need my medication next month.The situation is unacceptable not to mention stressful.
Yes, Lloyds pharmacy were struggling to get any hydroxychloroquine so I couldn’t pick mine up today - they are hoping it will be delivered on Monday. No idea why there are supply problems right now.
£1 a box for a drug tho is quite a lot if u think about it, that's not a small cost to a company and if they can get a cheaper alternative they definitely will unfortunately 🤷🏼♀️Like everyone everywhere they are trying to reduce their costs where they can and if its cheaper and more efficient to order from centralised warehouses then that's what they will do. Some companies like Boots for example have some of their prescriptions made up off site and they are then delivered to the store, so they are not actually made up in ur local store. I guess this is to help with workload in the chemist and on the pharmacist?
Hopefully after you have gone through those 4 boxes they should be able to source more for u
I get Bristol brand and they seem fine for me have u tried those?
Unfortunately Bristol Labs hydroxy gives me constant nausea and they are not coated so you get that horrible after taste. It's handy you can tolerate them as they don't seem nearly as hard to get as Zentiva or Blackrock.
hi
I have had the same experience getting Black Rock. The chemist also told me it would be back in stock in May and I hopefully have enough to last me until then.
I can really relate to how you felt and being tearful. I will check with my chemist again next month and hope he can order more in.
I think we ought to campaign to government to get the medication we need. Good luck
Yes what about people with allergies etc.. we're not the only ones with toleration issues to medical allergies. I'm a reasonably tough and resilient person but last week really ground me down. We need someone to bulk buy the different brands for us all and then we all go to one central dispenser. There always seems to be power in numbers. Sorry you're having trouble to.
I’ve sent a message to LupusUk as they might be able to help. They’ve been great in the past especially bringing the issues to public knowledge through their website advice.
My rheumatologist had not realised I was having a problems with Zentiva as I’d taken plaquenil with no problems for over 30 years. Then had issues with Zentiva, started side effects and couldn’t understand why until I read LupusUK advice. When I shared it with rheumatologist he was really shocked as he thought it had same composition as original drug plaquenil. I asked him if other patients had reported problems!
I've sent Paul at lupus uk a long email yesterday. I can't take quinoric or generic quinoric but can take zentiva. Yes it seems lupus can mess about with medication. You can be ok and then not with something or adversely react straight away sometimes. There's no rhyme or reason to it but many seem to have this issue. We have to find so much out for ourselves. I am so happy to have lupus uk, bssa (sjogrens) a brilliant rheumatologist, this site and a great lupus group even though I can only join them on zoom but we have a very lively WhatsApp group with a couple of nurses and a chemist with lupus. Every little bit helps. I hope Blackrock comes back available soon for you, the next trick is finding a chemist to get it when it does. 😵😜
Be aware that with ANY brand of Hydroxychloroquine it can be a highly toxic drug to one’s eyes! Hence before starting it you should be screened for any existing retinopathy for BASELINE data regarding your eyes.
HCQ induced retinopathy/toxicity is often overlooked by prescribers!☝️👆
Once on the drug you should have eyes checked by a properly qualified ophthalmologist for any eye changes induced by HCQ at least yearly.
OCT retinal screening should be done for eye safety. HCQ eye toxicity is often overlooked/underplayed by rheumatologists but NOT by the Royal Society of Ophthalmology who have said there is definitely a recognised risk to eyes.
Yep I got a baseline full check up at a private eye clinic before I started and go every year for a full scan etc. There are a few I have met with Sjogrens and they warned that their eyes are irreparably damaged and that that damage continues even when you stop. The Ophthalmologist at the eye clinic is sure that if any even tiny damage appears they will pick it up before there is any issue. I agree so many do not know or are not told of this issue and some have said to me they wish they never took hydroxy. As it's lowered my dsdna blood result considerably and thereby keeping my immune system dampened somewhat, I am prepared to take the risk. It's such a difficult thing though weighing up risks and benefits. I am just hoping the new drug you can get in the USA gets approved through NICE soon and we can get that as I understand it does not cause eye damage.
Hi dg70
I'm sorry you're having this problem. I have added a link below to our latest information on this issue. At the end of the article, there is a section on what to do if your chemist won't supply a specific brand. I hope you will find it helpful.
lupusuk.org.uk/hydroxychlor...
Kind regards
Alida
Thanks Alida as I said earlier all the chemists here are no longer ordering for prescriptions. They go to NHS POD in some cases and in others some massive warehouse somewhere and the brand either isn't listed or they can't choose. The only chemist who was helpful out of four I tried said they get theirs from some warehouse in London but again whatever they are sent in terms of hydroxy they are sent and don't choose brands. That's why so many of us are ringing round chemist after chemist trying to find one that happens to have been sent the brand we're looking for and then we take our prescription there. In terms of POD if you have other things on your prescription and along with brand specific hydroxy the whole lot just sits there until to you notice or check at the chemist as to where your meds are (I noticed after a week that it had not been done) then you have to email POD and not your GP for an urgent prescription and then they send it to the chemist, POD will not order what is missing. POD almost seems to be like a BOT that does not communicate directly. POD doesn't seem to want to order brand specific if it has stocks of other brands. I had no idea all my items would be held up because of the zentiva issue and no message was sent to me. Many counties are switching to POD it seems, which takes prescriptions and medication out of hands of chemists and frees them up for the million other things they have to do now I'm guessing. No one can answer what if your chemist won't order specific medication for you and I tried many along with many others here who've tried and ended up phoning again and again. I really did not believe the posts previously from people trying to get a certain brand and failing, I thought they must be doing something wrong but this week I found out what its like. It's like hitting a brick wall all of a sudden. Sorry for the long reply its just incredibly frustrating. I don't think they have this issue in Wales as I'm part of the Cardiff group there so I couldn't ask anyone as Wales may operate slightly differently at the moment when I asked Karen.
Hi dg70
Thank you for the comprehensive reply - it is very helpful for us to know what kind of issues members of the community are experiencing. We raise these issues wherever we can and detail is always good. Would you be happy for me to specifically share your rely with Debbie Kinsey who is our information officer (and an admin on here). It would be useful for her to know. Which county do you live in?
Kind regards
Alida
Hi yes you can share this. I'm in Wiltshire and with the Cardiff group with Dalila. I don't think this issue has reached Wales yet. I have lodged the issue with the GP surgery as this has ramifications for any patient who needs a specific brand of medication as they will be experiencing the same as me soon enough.
Hello Alida
Can I just query that the info you have kindly sent to dg70 in regards to hydroxychloroquine issues is up to date as the article is dated 02/07/2020.
Many thanks
Jane
Hi Jane
I believe the article was originally written in 2020 but has been updated - but I am checking and will come back to you.
Kind regards
Alida
Hi Jane
I have gone back to Debbie Kinsey, our information officer, and the latest information is below (some of this information is what has already been mentioned in this post and replies, but I wanted to include it all, for completeness):
The general information about ensuring a prescription specifies the brand needed, etc. in the article is still relevant, and the information on Blackrock availability is up-to-date. We have heard of issues with the POD system, and we’re working on raising it with the right people. For now, all we can advise in that sense is to have the brand specified on the prescription & try other pharmacy chains. Sometimes independents can get hold of things more easily as they can sometimes use alternate suppliers whereas chains are sometimes tied to just one. We’ll update on this when we can.
We are working on updating the Zentiva information - there do seem to be some current stock issues. We are currently working with Zentiva so that we can update our information.
Zentiva confirmed to us last week that there are supply issues for the active ingredient in the medication, which will affect their ability to stock wholesalers and pharmacies. At this time, it is unclear how long this supply problem may last.
We are working on an article about the situation and some advice that we can provide. We hope to have this available soon, but we need to co-ordinate with various manufacturers and pharmacies.
Below is a summary of our current best advice, for completeness, but I know you are aware/have done a lot of these things:
1. Some pharmacies may still have stock of Zentiva Hydroxychloroquine on the shelf. It may be worth calling around some local pharmacies to enquire and, if you find some, get your prescription fulfilled with them.
2. Blackrock Pharmaceuticals is another manufacturer that is well-tolerated by many people who experience an adverse reaction to Bristol/Quinoric. You could enquire whether any pharmacies have stock available. Unfortunately, it may be difficult to get 200mg tablets because they stopped supplying the UK market temporarily this year and their next re-supply to the market is expected to be in May. However, they do supply a 300mg tablet. If you happen to be on a 300mg equivalent dose (i.e. alternating between 1 tablet and 2 tablets each day), this could be suitable. You can read more about this at lupusuk.org.uk/300mg-hcq/.
3. If none of the above is helpful, we would advise you to ask your pharmacist to call Zentiva Customer Services and chat with them about any other potential solutions. Their number is 0844 8793 188.
I hope this might be helpful and we will publish our new information as soon as we are able, as we realise this is a widespread issue.
Kind regards
Alida
Hello AlidaMany thanks for all the information.
I went to lots of pharmacies and finally got some Zentiva luckily.
I did ask about Blackrock. The pharmacist did say that as they are 300mg tablets I would need another prescription as the Zentiva is 200mg.
Let's hope it's not too long before Zentiva hydroxychloroquine is back in stock.
Thanks again,
Jane
Hi Jane
I do hope so - it is causing so much worry for so many people. I'm glad you got yours in the end.
Kind regards
Alida
lupus Uk have replied:
Hi, Blackrock – 200mg tablets are out of stock until May 2023. However, 300mg tablets are in stock. Zentiva – there are no supply issues and there is good stock, but some pharmacies (particularly Boots) may be using the incorrect product code so it’s showing as unavailable, If patients have access to alternative pharmacies, they could try taking their prescription elsewhere. If not, they could tell their pharmacist to contact Zentiva. For Boots, the product code the pharmacist should be using to order from Alliance Healthcare is 6293716.
Thanks I did try but it was the fact that they just don't order specific brands anymore but say they request hydroxychloroquine and what they get they get. They no longer are involved in ordering stocks for prescriptions in the Boots branch but its done at the warehouse and is non brand specific as Wiltshire POD handles it all. It means ringing round every month to happen to see who's been sent hydroxy and what brand. Up until last month they would order it in for me but as the system they use has changed Boots no longer do and many other chemists are going the same way here. Thanks anyway.
interesting I’ll let Lupus UK know perhaps they will raise with Boots the Chemist.
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