£98.00 for Hydroxychloroquine??!!: Hi. Not sure if... - LUPUS UK

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£98.00 for Hydroxychloroquine??!!

Bee1london profile image
9 Replies

Hi. Not sure if anyone else has had a similar experience.....I went to the London Lupus Centre and was prescribed Hydroxychloroquine. I'd had stomach issues and bleeding when on it previously so the prescription stated a specific brand. It has taken weeks to order this particular brand at Boots and they've just rung to say it is going to cost me £98.00!! Has anyone else had this experience? I said I'd try and get a prescription from my NHS GP instead but the pharmacist has to return the order before I can get an appointment. Going back on steroids seems like an easier option at this point! Has anyone else had similar issues?

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Bee1london
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9 Replies
Bacardibabe76 profile image
Bacardibabe76

Hi. Unfortunately private prescriptions cost a lot of money. What brand was it? ZENTIVA? As that's hard to get a hold of at the moment.

Please note it will take approximately 12 weeks to feel the benefit of hydroxy. So I would defo make an apt with your docs for a prescription, they may not prescribe it unless they have confirmation from the specialist to do so.

Good luck, don't give up 😀X

AnnS profile image
AnnS

It's definitely the Zentiva brand you need to avoid the stomach issues that the Quinoric brand seems to cause but you should be able to get it on the NHS without too much trouble. I had to get my GP to write specifically "Zentiva Brand" on my repeat prescriptions and Boots have always been able to order it. Occasionally they've tried to slip in some Quinoric but then I refuse to accept it and they order the correct one. It only takes a few days for them to get it each time and I've just got my latest supply without any trouble. £98 is horribly expensive. Was that just for one month's supply or more? If it was for more, perhaps while you're waiting for your GP appointment, London Bridge could re-issue a prescription for just one month's supply to tide you over.

Treetop33 profile image
Treetop33

No that's wrong. I got a private prescription from the LLC for Zentiva and it cost me around £20.

Lupiknits profile image
Lupiknits

I don't know much about private prescriptions, but I do know that Boots have become very reluctant to dispense anything that is not from their usual suppliers. This has happened since Boots was bought by another company. i even overheard a hospital pharmacist discreetly telling a lady that Boots does this, and to try other pharmacies. I get mine (GP specifies Zentiva) via the pharmacy attached to my GPs with no problems at the moment.

Cas70 profile image
Cas70

My NHS practice won't prescribe Zentiva. Yet I understood they cost about the same. Fight to get this on NHS - go to another chemist as well - I now go to an independent one - I get a really personal service. Zentiva suits me much more too - worth trying for it.

PMRpro profile image
PMRpro

If you go to a specialist privately - you have to get a private prescription and pay the full cost of your medication. Drugs are not cheap, generics are cheaper.

But as the others say - don't go to Boots, go to an independent chemist if you can find one.

Bee1london profile image
Bee1london

Thanks everyone. I saw a GP today and she said she couldn't prescribe it to me directly as she needs a shared care agreement with a hospital consultant first. Thanks for your advice everyone. Am going to try an independent pharmacy with the private prescription and see if they can do it any cheaper than 98 pounds.Then just got to wait for the NHS apt to come through for Guy's.x

Ralph3 profile image
Ralph3

Hi all

My local chemist was struggling to get zentiva and was sent a brand black rock?

I subsequently spoke to uk suppliers who confirmed that it's not discontinued and they are expecting delivery from manufacturers early September

Wendy39 profile image
Wendy39

Hello. Yes, I learnt about private prescription costs after my hip operation. They gave me some strong pain relief to take home and it was over £20. I was told then it was due to the fact NHS prescriptions are capped, whatever the drug cost. Whereas with private they charge cost price. In April this year I saw Dr Kaul at London Bridge and he recommended I start mepacrine for my lupus symptoms. It's an unlicensed drug. Rather than give me a private prescription he wrote his recommendation in his follow up letter & treatment plan, addressed to my GP who had referred me to him. My GP then prescribed it. The pharmacist talked to me about it and it turned out the 50mg capsules are over £700 a go. We compromised and she ordered me the 100mg tablets that I cut in half. They were cheaper but she didn't tell me by how much. I'm so glad I didn't have to pay for those myself. I hope you have yours sorted out now anyway. Best wishes. Wendy

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