NO Hydroxychloroquine

[Barbara17]

Hello. I had trouble getting all my hydroxy prescription last month and now I’ve been told there is NONE available. This pharmacy has been very good in getting me Zentiva but now it seems they can’t get any brand at all. Has anyone else had this problem? I’m in Lothian, Scotland.

[Hidden]

Morning Barbara. It seems ok here in East Yorkshire. I picked my repeats up last week fine. Did they say how long it would be until they get any in? I hope its not gonna be too long!

[CarolMcl]

Hi, seems ok here too. I'm North Lanarkshire

[RosieA]

Yes, I am in Wiltshire. My two local pharmacies were unable to get any brand. Luckily, they had some in stock. This has been going on since late March. I am able to get 300 mg Blackrock. Not the ideal dose but better than nothing when my 200mg tablets run out.

[RosieA]

Sorry, on reading back my reply it didn't make sense. Essentially, the pharmacies are unable to restock any 200mg HYD tablets of any brand at present.

[Barbara17 in reply to RosieA]

Thanks, Rosie. I’ve got a wee stash as I tend to cut down what I take in the winter months but it won’t last long. I see my dermie next week but I doubt she’ll know anything about it.

[RosieA in reply to Barbara17]

I can usually cut back a little to 300mg in the winter but in the summer my photosensitivity will cause my disease to flare so it's up to 400mg - slightly above weight recommendations but it does help. It is a worry no doubt. x

[Betty909090]

Irrespective of shortages of various HCQ brands we all need to be more aware of ocular toxicity from the main ingredient itself, HCQ.

Unfortunately not everyone is because prescribers still remain too mute!👆

Have a read:

healthunlocked.com/lupusuk/...

Of course I’m aware this post will not be popular…but?👆🧐

[Bessy01 in reply to Betty909090]

that is precisely why I stopped taking hydro 6 years ago plus didn’t notice any significant improvement with it.

[flo_IarFachYrHaf in reply to Betty909090]

I was told about this when prescribed and as soon as I saw my optician (also an ophthalmologist) she arranged additional, appropriate eye checks

[Chris21 in reply to Betty909090]

do you take hydroxychloroquine? If not do you take something else to help with pain? I only ask because the rheumatologist has reduced my HCQ to 200mg as his concerned I’ve been on 400mg too long (6yrs) and for the very reason you say. When he said it he hadn’t realised I see the optician every year as well as optometry. So far I’ve not had any problems with my eyes except usual small cataracts that come with age 🤷‍♀️

I’ve only just reduced it 2 weeks ago what I’m finding at the moment is, joint pain seems to be increasing but the gut disturbance has reduced to almost non exsistent! I shall persevere and hope it all settles.

[Betty909090 in reply to Chris21]

Hi Chris21,

I have stopped HCQ completely and don’t miss it at all. Rather than repeat my “saddish” history here, 😱have a read of that link which I’ve posted above.

It has some 15 responses to date. In my case to continue taking HCQ is too risky: irreversible retinal damage had already occurred probably during covid lockdown (2020-2022) and eye checks weren’t done. NHS neglect has been proven in my case.

Ophthalmology were also in lockdown!😩

Hopefully and luckily my MMF+ Prednisolone 1mg/2 days seems to be keeping my lupus nephritis, SCLE, SLE well managed and at bay? But who knows for how long?

BTW your joint pain may be part of lupus which with me comes and goes rather than being related to a lower dose of HCQ? Paracetamol helps with mine.

Best wishes.

[Chris21 in reply to Betty909090]

Thanks Betty909090 for your reply. I have been taking paracetamol all the time as well as HQC and low dose aspirin for sticky blood. I do question if the consultants actually know half time what they are doing. Im lucky in that my eyes haven’t been affected so far. I was shocked when the rheumatologist said ‘think you should reduce HQC as you’ve not seen optometry for 3 years.’ I saw them last August. 😁

Anyway I shall continue to reduce HQC (hopefully might even manage to stop it) and if necessary can take more paracetamol if needed.

Take care.

[Hamptons in reply to Betty909090]

Kent have a specific testing for HCQ users on top of your own regular eye checks. It’s taken very seriously.

[caninecrazy in reply to Hamptons]

i am reading this with interest as i have been taking hydroxy too since 2005. I was on 200mg daily then increased to 400mg as rheumatologist said it is based on body weight and i had increased in weight as had lost so much before due to grief. This gave me banging daily headaches so i reduced it back to 200mg daily. It's probably my age and the fact that i wake every day with dry painful eyes but my vision these last few years has deteriorated a lot. I see an optician every 2 years who says the hospital should check my eyes but hospital say no need due to funding and i have my eyes checked myself. I am 51 so could be just age but was curious x

[MrsMarigold]

May I ask then throughout the UK who manufactures your hydroxy? This is a very concerning problem

[Barbara17 in reply to MrsMarigold]

I usually get Zentiva but the pharmacy say that, at the moment, they can’t get any brand. She’s going to make more enquiries and let me know what she finds out. It is a worry.

[Breavheart in reply to Barbara17]

I have been taking a medication since 1997 and now I can’t get it anywhere. It’s been out of production since the beginning of the year and I’ve looked everywhere around my area in England and there’s none in stock apparently they were having a production issue and it should’ve been righted in March ,but it still hasn’t and then I looked at their website ,and it’s been 30 now since they had their license. Maybe some of the well-known brand named ones are being phased out in favour of all the generic ones I’m going to have to now change to something similar , which I am dreading it, in England boots have got an online prescription checker, where are you can put your medication in and it gives you a list of all round the area and counties, I have been travel miles to get mine and to be honest, I’m fed up of trying to find it so I’m gonna have to visit the doctor and have a chat. Good luck to you ❤️‍🩹

[Wendy39]

lupusuk.org.uk/availability...

Hope this information helps.

Best wishes

Wendy

Photo

[Wendy39]

I’m hoping you find this helpful and can get answers from this number.

There’s a telephone number here.

[Betty909090]

The latest update is here from Debbie Kinsey (administrator) if you’ve missed it:

healthunlocked.com/lupusuk/...

[Snoopdoggy]

hi I have had no problem here in Bedfordshire .

[AgedCrone]

Have you looked Community Pharmacy Scotland ….it lists drug shortages?

[Barbara17 in reply to AgedCrone]

thanks, I’ll check on there

[Frosty1960]

Hi Barbara, I'm having same problem at the minute was given a ration of 10 tablets last week. I am in Edinburgh according to doctor i spoke to last week there is nothing about shortages in Lothian heath board web site, there was an updated article on here a week or so ago about the problem. It is particularly annoying the now as my skin has quite a few outbreaks at present I will be back at pharmacy this week for another ration i am having too reduce my dose from 400mg to 200mg to make tablets go further.

[Barbara17 in reply to Frosty1960]

Hi Frosty. I’m in Midlothian so we’re chasing the same suppliers. I’ve to check with the pharmacy on Friday. I think I’ll try and reduce to one 200mg tablet a day too and see what happens. 😱

[Frosty1960 in reply to Barbara17]

Hi Barbara, I was just in the pharmacy and apparently the supply is back up again, unfortunately they don't have them in just yet but should have them tomorrow hopefully thats things back to normal.

[Barbara17 in reply to Frosty1960]

🤞

[Lupusfighter19 in reply to Frosty1960]

Omg. I'm sorry to hear. If you were here I give you my bottles. I stopped taking mine. It seemed like I had more flare up while taking them. When I stopped it lessened.

[Potatoheat]

Yes same here. They gave me 6 tablets yesterday , and said they will get more soon !

[Lizard28]

So far no problems in Ayrshire.

[Lucylou72]

It's a concern isn't it because it's so important for many of us. I think there must be am affect on other drugs too. I went to 4 different chemists for my sons psoriasis prescription to no avail so had to report back to Dr's who wrote different prescription s and even then I had to try different pharmacies. I really hope they sort it for you soon. Sending best wishes to you x

[Lupusfighter19]

No issues here in the states.

[ange726]

I'm in Germany and have been told there is no hydroxy in the whole of the country either 😔. Been off them for 2 weeks now and no news on when they are getting any back in.

[Barbara17 in reply to ange726]

it’s worrying it’s not just the U.K. I thought Zentiva was a German company but I’ve just googled it and their factories are in Prague and India.

[ange726 in reply to Barbara17]

It is worrying, because there is no date the pharmacists are being told when it's coming back in. I hope it doesn't affect you too much x

[KnitSewPurl]

Oh dear , I really feel for you my dear.. I just had my Prescriptions about 3 days ago prescribed to me. I am based in South of England got both box of Zenvita.

[laura_ladystardust]

Hi Barbara,

I'm in Glasgow and had the same issue in March. I went into one of the bigger Boots pharmacies in the city centre and got it there no problem. Looks like they have changed the supplier again so maybe that was the issue. My usual pharmacy just said they didn't have it in and didn't know when they'd get it back - not exactly helpful!

Best wishes,

Laura

[Barbara17 in reply to laura_ladystardust]

I got the balance of last month’s prescription on Saturday. Today I ordered this month’s so let’s see what happens now

[Frosty1960]

Hi Barbara, eventually got box yesterday although its quixotic by Bristol laboratories not zentiva so see how it goes hopefully no adverse reactions. But at least its something at last.

[Barbara17 in reply to Frosty1960]

Hope you’re ok with that. I actually got Zentiva, much to my surprise.

[Frosty1960]

Hopefully be fine can remember years ago had problems with stomach pains/ diarrhea fingers crossed not that brand. Thats good you got zentiva as it has never caused me any problems.