Hydroxychloroquine Availability - 5th September 2019 Update

[Paul_Howard]

Hi everyone,

As many of you are well aware, we're continuing to receive an increasing number of enquiries from people who are struggling to get hold of the brand of hydroxychloroquine that they need (most commonly Zentiva or Blackrock).

The conversation has come up in this community a few times and I want to keep you regularly updated. To help answer all of your questions on this topic and provide you with an information sheet to hand to your prescribing doctor and/or pharmacist we have updated and improved the Q&A on our website. This can be accessed at lupusuk.org.uk/hydroxychlor...

Blackrock Pharmaceuticals

At the end of last week we received an update from Blackrock Pharmaceuticals.

They confirmed that their product has not been discontinued and is not out of stock. The product should be available to pharmacies through major pharmaceutical wholesale suppliers.

Blackrock sent letters to UK wholesalers and Retailers last week confirming the full availability of their hydroxychloroquine tablets. You can access copies of these letters on their website and read the full update at lupusuk.org.uk/blackrock-hcq/

Zentiva

I spoke to a representative for Zentiva at the beginning of this week and they indicated that they will be taking the same action as Blackrock. I'm expecting a call back from them tomorrow (06/09/2019) when hopefully there will be more to advise.

Please let me know if you are continuing to have trouble getting hold of these medications. I'm collecting as much evidence as I can for now and making plans for further action.

[Barnclown]

🤩 THANKS PAUL 👏👏👏👏👏👏👏👏❤️🍀

[Wendy39]

Thank you so much for this Paul, we are all very grateful that you have taken action on our behalf and are keeping us informed. It’s such a frustrating situation especially when the pharmaceutical companies say there are no stock problems etc.

Wendy

[Paul_Howard Partner LUPUS UK in reply to Wendy39]

Whilst there were some supply issues with the pharmaceutical companies, they have taken our reports very seriously and addressed them fairly well. It is becoming clearer that the wholesale suppliers are the source of the problem - simply refusing to order sufficient quantities to meet demand. I finally managed to speak to the MHRA yesterday and they have advised me to raise this as an urgent problem with the Department of Health Sale and Supply Team, which I will be doing this morning.

I will also be looking at whether an open letter and petition addressed to the wholesale suppliers could have any weight.

[Wendy39 in reply to Paul_Howard]

Once again Paul, thank you. It’s a battle that’s too big for us to fight individually. But together we are stronger.

[Gizmok9]

Thanks Paul, my Boots got Zentiva this week ok 👍 👍👍😀after 6 months since they last did! I had Tried all other local chemist s and ended up taking 90 miles away to get it ! Fingers crossed 🤞 stays sorted now, thanks

[Krazykat26]

Thank u Paul..hope u had a fabulous holiday!! Xx

[Paul_Howard Partner LUPUS UK in reply to Krazykat26]

I did have a lovely time thank you

[rodders1941 in reply to Paul_Howard]

Paul lv been on steroids for 5 month i. e. 2 a day, but lm trying to trace a medication to replace them is hydrocortisone any good if not is ther any other

you know of . kind regards Rodders

[Paul_Howard Partner LUPUS UK in reply to rodders1941]

Hi rodders1941 . I'm afraid that I am not medically qualified and therefore cannot offer you any advice about your treatment. If you are unhappy continuing with the steroids then I'd recommend that you discuss this with your consultant and see what other options might be suitable.

[paula-moo]

Thank you so much for taking this action and for keeping us so well informed. I have just moved to a different pharmacy as the old ones were not able to get Zentiva for me each time. The new pharmacy have a couple of boxes in stock but told me yesterday that when they have looked on their ordering system to get more stock in they now cannot order Zentiva from their suppliers at this present time.I told him the pip code etc from the last update that you kindly provided us with but he said that if the suppliers do not have any they will be unable to source it for me.It just seems to be a constant problem for so many of us.

[Paul_Howard Partner LUPUS UK in reply to paula-moo]

Thanks for sharing paula-moo . I'm hoping to make more progress on this within the next week and fingers crossed we'll have more suggestions for getting hold of it.

[Lucymay]

Thanks Paul for all your help, 🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟

[paula-moo]

Thank you Paul.

[Suzie]

I have found it impossible to get hold of Zentiva brand for 12 months now, it is my preferred ,I am now taking Black rock which appears to be easier to get, but not always available here on the Isle of Wight. One of the staff in Boots Newport advised me he could only get Quinoric and that I should see my Gp to get a different medication that did the same thing! I was shocked and said this is a very specific drug and he said no, you can just google it he got on his computer and found the name of another drug and said to ask my Gp for that! I was shocked. Terrible service. He was not a pharmasit !

[Paul_Howard Partner LUPUS UK in reply to Suzie]

It is very disappointing to hear about your pharmacist, although it is probably a misunderstanding as they do have the same amount of the active ingredient. It is only the tablet fillers that differ and they may not have known about the side effects some people have. We have a factsheet on our website that you can download and print for your pharmacist if needed - lupusuk.org.uk/hydroxychlor...

We're doing what we can to try and address the issue with getting hold of Zentiva.

[Suzie in reply to Paul_Howard]

Hi Paul, you've miss understood me, he was not talking about different brands, he gave me the name of a completely different drug! I was shocked. I do understand about the different fillers and this is why Quinoric gives me big brown patches on my skin. Annoying, as it would be so much easier if it did not.

All your help is appreciated , my husband recently spoke to a pharmasit on the Island and he has suggested to try an independent pharmacy next time.

Many thanks.

[Paul_Howard Partner LUPUS UK in reply to Suzie]

Hi Suzie ,

Thank you for clarifying. Out of interest, do you know what the alternative medication he suggested was?

Independent pharmacies do tend to have more flexibility when it comes to their suppliers and dealing with problems like this.

[Lucymay]

I finally managed to get some BlackRock hydroxy but still cannot get zentiva. I have been on the BlackRock for only 3 days and the side effects are horrendous. Stomach pain , sickness, feeling absolutely dreadful. It's very worrying what's going to happen . If I cant tolerate these tablets what will I do . I can't thank you enough Paul for all the hard work that you have done. For us all.

[Paul_Howard Partner LUPUS UK in reply to Lucymay]

Hi Lucymay ,

Thank you for the update. I'm really sorry to hear that the Blackrock version is no good for you. At the moment we are awaiting a response from the Department for Health & Social Care, but they are extremely busy at the moment because of everything related to Brexit. I'm also trying to get through to a gentleman associated with Zentiva who may be able to provide me with contact details for some of the wholesale suppliers so that I can speak to them directly about what is happening.

[kingsnorth]

Thank you Paul those are the only brands that don’t upset my stomach x

[lupime]

I am having difficulty getting hold of Zentiva again. Last week my pharmacy said it was out of stock at all three of their suppliers. I am still waiting for some.

[Paul_Howard Partner LUPUS UK in reply to lupime]

Hi lupime ,

I'm sorry to hear that. Has your pharmacist tried calling Zentiva Customer Services? They may be able to tell them which suppliers are likely to have stock or when they will be distributing more to them. They can call them on 0800 854 431.

[lupime]

Thank you Paul. I will take that number to my surgery and pharmacy tomorrow.

[athi0110]

Hi Paul, I need to have supply of Zentiva but my gp told me that he can not prescribe it because it does not appear on their system. I contacted my pharmacist who told me that he could get it if I have a script specifying it. Subsequently he talked to my gp's secretary who said that if I want zentiva they can give me a private prescription and I have to pay for it as the hydroxy made by zentiva is much more expensive than the generic they can prescribe.

Is this common to the nhs uk? Is there anything I can do as it's only zentiva hydroxy that does not give me stomach problems.

Thanks for your help,

Athi

[Paul_Howard Partner LUPUS UK in reply to athi0110]

Hi athi0110 ,

I would recommend speaking to your GP again, rather than their secretary as they cannot make a medical judgement regarding your need for a particular medication. If you cannot tolerate other versions of hydroxychloroquine then the Zentiva version should be prescribed for you. This would be less expensive than having to manage additional side effects or a lupus flare caused by not taking the tablets.

If Zentiva isn't listed specifically on the GPs system, can he write it manually for you?

[athi0110]

Thank you so much Paul. I will write to my GP and hope for the best.