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Sticky Blood-Hughes Syndrome Support
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Issues getting Zentiva made Hydroxychloroquine and alternative manufacturers

Hi all, this is a repeat of a reply I put to a recent post on availability of Zentiva locally to me in Sussex to see if its everywhere or just my local supply chain.

All I want to do is just be given the medication that makes me able to function sort of normally...

and not have to see if I can get on with others or not.

Have had issues yet again today, had found a Pharmacy, Day Lewis who's local Branch at Hassocks would usually hold some Zentiva in stock but would still be given Quinoric each time and need to check on collection to swap but today they gave me some from Bristol Laboratories Ltd. They are Hydroxychloroquine sulfate 200mg Film-coated Tablets but so are Quinoric and I asked the question as to were these like Zentiva or Quinoric as one I can tolerate one I can't... Moody mare of a Manager was most put out that I dared to question what I was given and even more so when I said that I wasn't willing to risk taking them .. I would have been the rudest customer she had had all day if I didn't think they may still be my best bet mind.... so deep breath taken I refused to take them on basis that I didn't know if I could tolerate them. All she could say was she would need to call the manufacturer... but in a tone that meant there was no way she was bothering... or get the GP to specify Zentiva. She then said if I was refusing these then I couldn't have the other items if I was to take the prescription elsewhere.. so I said fine... take them and go off to GP's

The added problem is I can not get the GP to write either Zentiva or NOT Quinoric on the prescription just Hydroxychloroquine sulfate 200mg Film-coated Tablets, so when I went to the Surgery today to try to sort this I was told by a receptionist that 'oh yes it says here you CAN have Quinoric' .. NOOOOOOO! That was from the last time I was trying to sort this and they managed to get that wrong way round on record.. Next job is to email the GP's to voice my concern that my records are incorrect and how do I check and change them....... She wrote everything down and said a Doctor would call.........

So back I go to Day Lewis and ask to speak to Pharmacist this time.. Get the real deal story.. They have none, they can request it but will be sent whatever the Group Buyers buy but even then there is no guarantee as to what will be in the regional depots.... It's a Lottery that up to now has worked. He is well aware of peoples issues with Quinoric and was the first 'non APS' health professionals when I first met him who knew and explained the difference in formulation...

He was however willing to try to source some Zentiva although to be honest I took it that really I shouldn't hold much hope... and he gave me the full details for the one they had in stock...

Sooooo big question please Ladies and Gents.. I do also understand there is no guarantee from this.... Has anyone used the following and had any adverse reaction (some will regardless I'm looking for numbers) or more importantly anyone on it and how is it going...

They're ALL Hydroxychloroquine sulfate 200mg Film-coated Tablets but specifically from

Bristol Laboratories Ltd, PL 17907/0017

Thanks in advance

Have a week or 2 left so want to try and get a hold of this as soon as..

Barry

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I can't tolerate medication like Plaquenil or similar, however my daughter is on it, every so often a new pharmacist tries to fob us off with another, and I always go in and hand them this, they then follow it up and order it. See bottom of this link: lupusuk.org.uk/hydroxychlor... I also got St Thomas' to write a letter stating that is what my daughter should have!

MaryF

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Brilliant!

Thanks Mary x

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HI, I cant have this brand. definite NO NO for me. I get my Zentiva plaquenil Hydroxychloroquine from Boots the chemist, it does state Zentiva on my prescription.

Worth getting GP to state on prescription, once done you will never have a problem as the chemist has to supply.

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Barry I use hydroxy without any problems. I suffered the same as you not feeling normal. did you have problems with dizziness and falling. I see you live is Sussex near West Allis where I live. Would like to meet with you sometime to discuss meds and symptoms, and who your doctors are, if that is acceptable with you.

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Well first time I was given Quinoric I took it back to surgery and told them that Guys hospital say onlying Zentiva suitable.so I got that and it was written on prescription for only that brand.Then I felt guilty as I realised I had been off another brand to both of them but still I took the Zentiva anyway. Next time was fobbed off with Quinoric and immediately gave back.they didn't have to get it in especially for me as was in their small pharmacy. ..just error on checker in there

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I had this problem also, in the end I downloaded the information given by the Lupus group (pinned on here) and took it to a small independent pharmacy. I have had no problems since. Hope this helps.

Incidentally I was very rude in a very well known pharmacy but the truth is they are contracted to certain manufacturers and therefore have no choice. My complaint is they are never upfront and honest about their limitations. Good luck and best wishes for 2018

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Hi Barry

If you have not resolved your issue with getting any Zentiva yet then I would do the following:

1. Call the Zentiva customer helpline 01483 505 515 and ask them directly what the supply issue is in your area for this drug "HYDROXYCHLOROQUINE SULPHATE (ZENTIVA) 200MG FILM COATED" and the 'PIP number' (Product Code) is 1201730. If there is nothing in your area ask them where is the closest pharmacy that has stocks (when were they sent there) and if and when the supply to your area will resume. (please post back on here so we have an update). You can also ask if its possible for them to send an emergency supply to your favoured chemist.

2. Make an appointment to see your GP. Ask your GP whilst you are in your appointment to write you out a script stating the above only so you have a single script you can take to any chemist and make sure your repeat script is also noted again asking for that medication to be printed on its own for the above reason. Do not rely on a receptionist to do this. If necessary make the appointment with another excuse to see the GP!

I will try also and get updated info on availability and then update the Plaquenil post under pinned posts so everyone can see what the situation is in their area.

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As promised here is an update on the Zentiva Hydroxychloroquine sulfate 200mg Film-coated Tablets that so many of you take.

There are NO shortage or supply issues with the above drug Im assured by the company.

The issues seems to be that other generics are currently cheaper and because of that and because or prescribing guidelines, many pharmacists will only be supplied with the cheapest drug sent to them by the wholesaler they use. The three biggest ones, Alliance which supplies Boots, AAH and Phoenix will be only ordering the cheapest drug and therefore a pharmacist will only be supplied those drugs. If you are told there is a supply issue, it is NOT because there is no Zentiva, its because the wholesaler are not supplying that brand to the pharmacy.

You have a better chance of getting the drug of choice if you use independent chemists rather than chains. Even so, they have to open accounts with wholesalers who will purchase the drug on their behalf. If the local prescribing policy is to only supply the cheapest drug then there would still be an issue. Basically, GP's have the legal right to prescribe whatever they want for their patients if it is in their best medical interest, even if their CCG is dictating and restricting drugs on a cost basis.

If this issue is allowed to go on, Im told that there is a risk that the manufacturer may decide that its not in their interest to continue making the drug as manufacturers costs may be difficult to reduce to match competitor generics. The only way to stop this practise from happening both for this drug and all others under threat from NHS cost cutting and their ridiculous sourcing procurement policies, thats stops purchasing from cheaper EU countries, is to make sure that the drug is specified on a prescription. That means patient power. If you want to continue to have Zentiva you need to go to your GP and persuade them its better for you than the alternative cheaper generic and if necessary provide proof of the side effects that has on you or get your specialist to write and tell your GP that it should be prescribed. Once its written on your script, the pharmacy has to supply that make of drug and the wholesaler will have to purchase it on the pharmacists behalf for you.

Each individual area in the UK will be affected by the prescribing policy in place and how firmly its being applied. So, in short, if you are having problems, its down to you to get the specific drug you want on your prescription, only then are you guaranteed to get it.

I will update the Pinned Post article on this subject.

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Thank you all for responses above, especially APsnotFab, was absolutely spot on, Its all about the cheapest brand.

I wrote to GP with info attached and he now writes 'Must be Zentiva Brand, please DO NOT issue Quinoric" on Prescription. This failed through EPS to a larger pharmacy group though but works by handing Green Prescription to them ... Thank you again

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