Following on from my various posts, I thought you might like to know the following- Zentiva have emailed me to follow up on safety issues as I told them I had reduced my hydroxy to half in order to last longer. Last night I managed to get 45 tablets so am back on my 400mg dosage I need. They wanted to contact my ‘healthcare professional’ to which I said no. I did not involve them in my struggle to get my prescription fulfilled and they should deal with health and not supply.
I have asked the questions we want answered around supply, distribution, pharmacies not being able to request specific brands, problems etc. This affects so many of us and not everyone is a battler or mobile. For us all, I am happy to challenge anyone to get to the bottom of this issue - if I possibly can.
At 63 and 17 years diagnosed with SLE, I know what the additional stress does to us. As I say, you don’t employ me so can’t sack me so I will have my say. If I can get any answers for us all (I have said it appears to be nationwide and random) I will keep you updated. Good luck everyone and take good care of yourselves x
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An afternoon of exchanging emails, the issue of shortages and lack of availability is now being escalated to their primary care team who will be contacting wholesalers to understand what the problem is. If they are ordering enough we should not have problems with supply. Their medical team will contact me shortly with a response.
So far so good. Not getting stonewalled and maybe we all get to understand the issues. Proof of the pudding will be when we can get supplies of our meds 🤞
Thank you so much for doing that ,Cobsie. Much appreciated. I just started on my alternative dose of Hydroxchoriquine last night so just waiting to see what effects it would have on me .xxx
If you mean reduce your dose, I did that on my consultants advice a few months ago. Symptoms were gradual and subtle. It wasn’t until it was increased because of another health issue that I realised I needed the 400mg. Good luck, take care and not risks x
Oh no , I meant alternative drug manufacturers as per-the same Hydroxchoriquine that I got from the Pharmacist , I am not able to reduce my dose, I hv tried it before I was very ill was in constant flare ups not able to walk and function properly and in constant pain and migraines so it was really not good for me.
thanks for chasing 🤞🤞 hopefully getting somewhere… I only got half my script this time.. I’m slowly running down my stash I had saved up. I’m chasing Boots for it in a rural area so can’t go to other chemists.
No problem many of us affected. My small stash has gone and I’m not sure my Gp will reissue the prescriptions that haven’t been fulfilled. Considering Boots are the number 1 pharmacy does make you wonder. I might have ruffled a few feathers but just want our meds sorting . Hope you get the rest of yours soon. Take care x
I was nearly out. I've been having issues with all local pharmacies not wanting to order zentiva even when it's named on my prescription. I've run out, went to the chemist Monday, opened the bag and ipca was in there. I refused it, pointed out what my prescription says and I'm going back today to see if they have ordered it in for me. If it says zentiva on the prescription they are bound to supply that and they get reimbursed for that brand. What's the problem???
I don’t know the answer but would like to. My prescription does not state Zentiva and now I am going to try to get that changed. 17 years with very few issues and now it is hassle. It isn’t that we want a pink one instead of blue, we want ones that our bodies can tolerate. Feeling sick and shaky is not on my list of preferences. I hope they can get yours sorted soon. After all, Zentiva do not have any shortages so why should pharmacies. If a box costs £1 extra I’ll pay the difference if I absolutely must. Take care x
The chemist in my lupus group confirmed that if your prescription states a specific brand of medication then they have to supply that and they get fully reimbursed. My trouble is getting a chemist to order it in now. They try and fob me off with 'our warehouse hasnt got it' or ' we don't order in anymore'. My dad can't have a certain brand of blood pressure tablets or his legs swell up so this non ordering issue of specific brands has a much wider implication and doesn't just affect hydroxychloroquine. All I know I was exhausted ringing round chemists and travelling to get it last time and dread this being the norm every couple of months. I hope you get somewhere with it. I know lupus uk are on it but they can't sort out every individual problem in every area of the country unfortunately.
Which is why I took it to Zentiva. They appear to be the brand that is tolerated by the majority. Their sister company developed it, so you would reasonably assume they are the market leader. Unlike Heinz baked beans, this is not a taste preference. Resolving this, or finding out how to go higher, helps all of us. Prescribing/ pharmacy availability should not be a post code lottery. It’s not a choice we got in life and stress does make it worse. I too hope not to trawl around every 2 months. Take care x
I know Bristol labs made me feel so ill. I think I narrowed it down to a certain filler, Silica in their tablets. Makes me feel very sick. It's in Bristol labs but not zentiva.
That’s right, the active ingredient has to be the same but it is the fillers and coating that makes the difference. There was a slight difference between Plaquenil and Zentiva but absolutely minimal with no side effects for me. See what happens - an email from Zentiva just coming in so might have an update, or just answer more questions. Take care x
My most recent repeat prescription came back as half Zentiva and half some other brand which I returned. My prescription stiplulates Zentiva brand only. Other non-Zentiva brands make me ill..... I have just over 1 month's supply of Zentiva so am interested to know what comes next. Thank you.
Well Done Cobsie. Thank you so much for your perseverance. I have the same problems with difficulty getting Zentiva - for over a year now - have quite a collection of other brands lurking in the cupboard and am rationing my few Zentiva. Thank you again.
You are welcome. Not sure how many of us are affected by this issue but I think it will be many. Until 2020 I rarely had issues getting Zentiva and it is worse now. Hopefully we all get a good result. Words don’t ease symptoms. Take care x
Well done with your battle to help us all Cobsie. We all appreciate it. I wrote to both my GP and Pharmacist a year or more ago about needing Zentiva otherwise my gastric problems go through the roof and cost the NHS even more by needing Gaviscon, Esomeprozole and the odd endoscopy. Result: GP writes on prescription “Zentiva only” and Boots Pharmacist has had a conflab with Boots supplier and however she did it got 10 boxes of Zentiva and put them aside for me. Recently they tried to substitute another brand I’ve never heard of but with a renewed ‘chat’ with the pharmacist she has managed to get hold of more for me. At 68 and in constant flare this year I don’t want this argument going on either. It just seems ’money crunchers’ rule the NHS and what they are doing is false economy because making those of us who can only get on with the Zentiva brand ill, by giving us other brands, is costing the NHS even more. Keep up the fight. Take care. Xx
Exactly. The possibility of making us worse through side effects and stress is high. The margins I expect are slim on the product but there must be a reason why. Warriors together eh? Keep smiling, take care x
Just adding my thanks to those you have already received here. It makes me so anxious each month wondering if I am going to have difficulty getting zentiva again, even though 'Must be Zentiva' is written on my prescription.
Cobsie Private Investigator!! 🤗You go girlll!! 🙌 I got my prescription yesterday... IPCA again 😔Well done for taking this issue on and thank you for keeping us informed of developments 👏👏👏💜🌈🦋xx
Cobsie PI 😂 cat with a bone! Zentiva have just asked me a few health questions following up from my phone call so no answers yet. I think that will be another department so maybe we will all get somewhere fingers crossed. Take care x
Hey Cobsie 👋🏼 Thank you for being our Voice in this matter ❤️ To let you know that in Hampshire, same issue happening. Randon as you say. Pharmacies I rang say "Out of Stock"
However, I spoke with Cohen pharmscy who can order Accord Hydroxychloroquine which does not contain 'Silica' which affects me.
My regular pharmacy keep ordering IPCA which makes me ill. Same as Bristol.
Cobsie - thank you so much for this. It is such a non stop battle for what we need. I honestly think that if 8 out of 10 sufferers were men instead of women it would be different. Xx
I went round all major pharmacies and also independent and couldn’t get Zentiva. Finally got it at Well pharmacy which, unknown to me at the time, is a major company. They assured me they do not use a specific supplier or rep and will order direct from Zentiva if necessary. Anyone struggling to get Zentiva who has a Well pharmacy close by I strongly recommend trying them. Xx 💊 👩🏻⚕️ 🏥
Thank you so much for that intel GE 🤗You're a star!! 🌟I've just had a look and there is a Well pharmacy in town where I live so I'm gonna contact them. 💜🌈🦋Xx
I have just got back from the Well pharmacy to get the 15 tablets they owed me. In the packet IPCA so that was a no. On their system it says Zentiva so they are ordering some and hope it comes in, but again not guaranteed. This pharmacist said if they can’t get them I need to try Boots. This is a merry-go-round I would prefer not to be on 😢. I will know beginning of next week if they are successful. Seems branched differ🤔🙄. Take care x
oh no 😢I picked up my prescription today and thankfully they did have Zentiva. It was my Tramadol, which has to be one of two brands, that they didn’t have. Thankfully it was on a separate prescription so I took it to Boots and got it there. Hope that you do get your Zentiva that you are due. Xx
Hi GloomyEeyoreThat's interesting because my Well pharmacy have Alliance as their supplier. Even though it says Zentiva on my prescription, they just receive any brand of hydroxychloroquine that is sent down by Alliance. I obviously say I won't accept alternative brands.
As I mentioned on a previous post by Cobsie, I managed to get my Zentiva at a Tesco superstore pharmacy. They had it in stock!
I have been in contact too, they sais same, no issues with supply, the big issue is the pharmacies warehouses refusing to stock it! and even though I gave mine the Zentiva custonmer number they have been warned by their head office not to ring Zentiva at all!! I have to order every 4 weeks and it is now making me ill, my poor hubby has to chase around each pharmacy each month to find me some, not on at all
That is not good news. Why on earth would they refuse to stock it? None of this makes sense and I feel for you and your husband. None of us should have to chase around. I think Zentiva should be having a good look at all this, and we are only talking hydroxy never mind any other meds. Take care x
I am in same situation, I reduced my dose as can’t source zentiva & have had nothing but problems getting them for years now. Having to take Bristol which are upsetting my stomach but what other options are there?? Hope you get some answers, good luck x
Thank you for all your investigations. It's only in the last 2 years since being on Zentiva that my irritable bowel and palpitations have vastly improved. I never put it down to the hydroxycholoquin, just thought it was part of Lupus.
It made such a difference to my early morning social life, no hanging around near a loo . It was wonderful, now been given Ipca and its all coming back again. Thought at first it was a combination of antibiotics for a urine infection, then Covid, antivirals, then vaccine . But actually I was OK after all that, it's been the last month of Ipca it's getting worse. Added to that I get who knows what make of omeprazole and azathioprine each time, so a different cocktail. One packet of omeprazole were bright green and yellow in colour, I refused to take them. Whatever is the reason to put such lurid dyes in capsule 💊?
I'm so fed up with it all, I'm lucky I am mobile and have no bad flares for years, thanks to my meds, so to be held hostage by side effects of meds is so depressing. Its embarassing to try to explain to people why I can't go out for a walk , much as I would love to.
I use an independant pharmacy, hes always got Zentiva for me, but now he says as other people do, can't get it.
Would be happy to pay if I could. What can we all do ? Xx
Sorry to hear you are suffering it is difficult to narrow down which one is affecting you when you are on different meds. Hope I hear from Zentiva again this week with something positive. Maybe I need to cut and paste some of all the comments together ( anonymously of course ) and email them to give a good spectrum of situations 🤔. It certainly wouldn’t hurt as I am sure they would like to know that pharmacies are warned not to contact them and will not supply their brand. Let’s hope we get some good news from across the UK - that would make a change! Take care x
Thanks for your hard work and chasing up with this!
Just wanted to post a quick reply as I know many people (potentially including you) completed the survey I put up about difficulties getting hydroxychloroquine. I don't want anyone to feel like the time they spent reporting their concerns on the survey, in emails to me, or in here goes unnoticed or unseen. I'm in touch with some different manufacturers and pharmacies and have outlined the problems people have been having. I'll post an update article when I can summarising the problems people told us they're having, what we have been doing with that, and what responses we got back and how we're moving forward. That update will likely come in a few weeks rather than a few days, but just wanted to let you know we're looking into it too.
With you on the case as well hopefully the information is getting through to the people that need to hear it. No one needs the stress every time they need to get a new prescription filled.
Thank you Debbie. I just got to the point where I couldn’t wait any longer. I will be interested to read your report and whether it is a post code lottery, and yes I filled the survey in. Zentiva have not responded yet, but there are definite concerns within the group, and no doubt others who are not on this or other forum. Pushing for answers from an end user perspective should only enhance your investigation from an overall level. Please let me know if I can help, or if I step on too many toes - not my intention at all. Take care x
You're not stepping on any toes at all, it sounds like you're doing some great work. It must be so frustrating to be dealing with all this and I'm not surprised you couldn't wait any longer. I agree it can be a really good thing from companies to hear directly from the people affected too. Hope you hear something back soon.
I went through this for years but over Blackrock brand. Cohens particularly we’re always denying they had to supply what my GP had stipulated. With the chains especially, they order from suppliers who order from the manufactures & if their suppliers do not order x brand they have to go out of their way to get it for you. I found independent chemists more flexible in this regard but loosing the last one locally meant relying on Cohens & their refusal to stick Blackrock. In the end the fighting became too much. Now I just take what I can tolerate, while juggling symptoms.
I found what makes the difference between chemist compliance & constant rowing is if the GP can prescribe a particular brand, like they do with some hormones, rather than a generic medicine followed by ‘x brand only’ on the prescription form, they will comply with the former & fight you over the latter. Best bet is a friendly pharmacist until hydroxychloroquine is prescribed by brand name only.
I have now asked for my Gp to specify Zentiva on future prescriptions but as they haven’t asked to see me, I am in doubt over this. I think my next move will be the contact my consultant and see if she will specify it, then the Gp will follow suit.
When I mentioned Blackrock to the pharmacist she had never heard of it. All a bit strange, see if I can get further this week and get some hope if not results. I know some have reduced their dosage same as me in order to eke it out. That in itself brings problems, just slightly less than having none. Take care juggling x
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