Another quick Zentiva update

[Debbie_kinsey]

We've updated our Zentiva information in our article here: lupusuk.org.uk/update-on-av...

Boots now have an arrangement with Zentiva and their supplier to gain access to Zentiva hydroxychloroquine when it is available. If your prescription is specifically for Zentiva, then you can try taking it to Boots Pharmacy where you should receive some if it is available. However, it is important to note that supplies are limited and may run out quickly.

I know that a few people have been reporting that they are struggling to get any brand of hydroxychloroquine in some areas of the country. I am in touch with other manufacturers and will update our information if/when I hear anything about supply issues.

Take care

Debbie

[Star13]

You mentioned in a previous post that they may adopt some sort of emergency system for those of us whose prescriptions specifically are written for Zentiva. Is that going to happen?

What do we do if we can't get any of any brand......just stop taking it and put up with the symptoms? Is that acceptable?

[Debbie_kinsey Administrator LUPUS UK in reply to Star13]

Hi Star13

As far as I'm aware the arrangement with Boots is part of the work they're doing to ensure that people who are specifically prescribed Zentiva can access it when it's available. Unfortunately they're still not sure how long the supply issues will last. They are keeping us informed about what they're doing and we'll provide updates whenever we can.

We haven't had any information about supply issues with other brands (other than that the 200mg Blackrock won't be coming back until the end of May / early June, though the 300mg is still available). This means it should be possible to obtain other brands. However, because we know some people have reported here or via email they have had some difficulties (whereas elsewhere there haven't been any) we're trying to find out if there are any other supply issues. Sometimes the issue can be with a particular supplier, so it's always worth trying other pharmacy chains or independents who may be using different suppliers.

If you are unable to get any brand, then the best course of action is to speak to your rheumatologist or prescribing doctor to see what alternatives may be appropriate for you in terms of other treatments or medications to manage symptoms. As we're not medically trained we, unfortunately, are unable to give specific advice about that, particularly as individuals have different medical needs.

These supply issues must be unimaginably stressful, and I'm sorry that this is happening. We are doing what we can to find out information and advocate for the needs of those prescribed specific brands or hydroxychloroquine in general, and will keep you updated with any new information or advice.

[Barbara17]

as far as I could see Zentiva is manufactured in Prague or India.

[Barnclown]

thanks very much for these updates, Debbie❣️👏👏👏👏

[Whippet_lady]

Hi, thanks for the update.

Has anyone said why there is a problem with supply? I was just wondering, if we know the reason for the problem, we may be able to contact MPs/doctors etc to ask if there is any way they could intervene and find a solution to the supply problem.

Thanks.

[Debbie_kinsey Administrator LUPUS UK in reply to Whippet_lady]

Unfortunately Zentiva aren't sure what is causing the supply issue, so they can't say how long it will last. It's specifically an issue with the active ingredient used to make the tablets.

[Star13 in reply to Debbie_kinsey]

 “Zentiva aren't sure what is causing the supply issue”

I find it hard to swallow that the manufacturer of their own tablet does not know what is causing a supply issue!! Of course they know, they are just not prepared to make it public!

I think more pressure needs to be put on them to come clean on what is really the reason behind these shortages and to give more clarity about how long it’s going to last.

Is the company in the middle of a take over for instance or are there financial issues behind what’s going on? We have good reason to be sceptical about what pharmaceutical companies say!

[Debbie_kinsey Administrator LUPUS UK in reply to Star13]

I absolutely understand your frustration with the whole situation. All I can do is assure you that we are doing our best to get information and advocate for patients' needs. We will provide updates as soon as we know anything.