Hydroxy chloroquine availabilty: Hi everyone Just... - LUPUS UK

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Hydroxy chloroquine availabilty

misty14
misty14
63 Replies

Hi everyone

Just wondering how your getting on with hydroxy chloroquine availability in your area?. I've just been told by my local Boots that the manufacturers have pulled plug on all brands of it except the Bristol Laboratories one. I've been getting strong side effects and needing Black rock one or wanted to try Zentiva!. Lucky now to get it at all!. It's bad enough being ill without having this added stress!. Xx

63 Replies
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Hollydebs

Hi Misty14

Whenever I get my prescription it’s the Bristol version of Hydroxychloroquine that I’m given and has been for a while locally. Luckily I don’t get any side affects with this so am fortunate.

Do you know why the other brands are no longer manufacturing or unavailable??

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misty14
misty14
in reply to Hollydebs

Hi hollydebs

Lovely hearing from you, glad you don't get side effects from the Bristol lab Hydroxy and you can get it ok locally. Our Rheumy dept don't agree with the differences in brands giving different effects and didn't know there is this supply problem. Well, they do now as I told the Rheumy nurse this am. Luckily I can try every other day dosage and hope it's better!. I don't know why suddenly the manufacturers have chopped them. Hope you got your heart test resukts OK. Xx

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ExtremeDuvetDaze

Oh no 🤦‍♀️ there always seems to be problems with hydroxy availability ! I wish they would just bring back Plaquenil, I was on that for 8 years with no problems then when I went back on it years later it was all generic and Zentiva was suppose to be the same but ended up having side effects with them all apart from the few Plaquenil that the chemist had left over which I was fine with!

Have you tried ringing around other local pharmacies Helen?

Diane 🌸 x

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misty14

Thank you for your lovely reply Diane!. That would be the best solution for this wouldn't it?. It's awful what we're having to cope with extra. I've had so much toe pain today that this just feels like the last straw and I couldn't face ringing round but will do so on a better day!. I've got Rheumy OK to take it every other day so that gives me more time!. Do hope your feeling a wee bit better for these next week's. Xx🌺😊🌺

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ExtremeDuvetDaze

Thanks Helen, life is a challenge isn’t it and then on top we have more stuff thrown at us to cope with! I do feel for you with that awful pain, I’m glad you’ve got the ok to take hydroxy every other day, I really hope that helps with some of those side effects. I’ve often chased down meds when my pharmacy can’t help by ringing around, it’s so energy sapping though!

I really hope you get it all sorted soon.

Take care, will be in touch soon.

Big hugs

Diane xxx🌺

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misty14

Thank you Diane for your lovely messages I just can't wait for my pain appt on Monday. Will be in touch after. I so agree these added stresses are just so wearing which we don't need being ill. I've looked at the lupus uk article and it says if you've tolerated Placquenil ok like you did then the brand to take is Zentiva!. You might want to try it?.

Luckily I've phoned a local independent pharmacy and there getting Zentiva OK with no problems!. Big relief. It's the one I want to try. Side effects are better with every other day but condition not so good so I'm seeing how I go. Taking each day is all we can do isn't it?. Glad my Rheumy appt isn't long now either!.

Thanks for your help and I hope you have a lovely time with your special visitors. Xx🌺😊

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ExtremeDuvetDaze

Thanks Helen, I’ve tried Zentiva, Blackrock and Quinoric as well as the original Plaquenil and Plaquenil was the only one I could tolerate! , Zentiva is suppose to be the closest one to Plaquenil but there’s something not quite exactly the same or I’d definitely still be on it! 😥 But we’re all different, you know me and my history of drug intolerance 😩!

Hope all goes well at your appointment and with Zentiva, so glad you managed to find a pharmacy with it👍

Yep one day at a time Helen.

You take good care.

Dxxx🌸💐

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misty14

Oh that's a shame Diane, thought it might be a help to you!. Thanks for your lovely message and good wishes. I'll be in touch next week. You take good care too of that foot!. Big hugX🌺😊🌺💕

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GloomyEeyore

I messaged Zentiva when the pharmacy claimed there was a problem before. They replied saying there was no problem! Took a print out of the reply, which included numbers to call if having problems, and haven’t had a problem since. Can only take Zentiva without problems. Due a prescription again next month so will wait and see with fingers crossed. Xx

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misty14

That was a good idea ge I am going to take lupus Uk's article with me with the contact info on it when I go to boots next. If no joy, I will do this myself. I don't understand why the pharmacy said there was a problem and manufacturer said there wasn't?. We sure don't need this added stress. Hope you get your prescription ok. Have you heard from maxiofacial yet?. Xx

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GloomyEeyore

No, I still haven’t heard from maxillofacial. Not sure where the problem lies. Two weeks ago the receptionist at my GP practice couldn’t see any referral having been done. She was going to talk to my 🌟(?) GP but no idea if she did or not. Can’t Phone maxillofacial myself as I have no reference number. Really not sure where to take it from here. It was back in April I was told I was being referred, a month since he said he was chasing it up and saying it is now urgent.

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misty14

Hi GE

Why don't you ring your GP practice and ask if the referral has been done!. That's what I do as it will be on your records if it has!. Shocking if it hasn't as its cost you valuable time.

Baba has given me some good info from Lupus uk about the Zentiva brand of Hydroxy. You might like to have it in time for your next prescription. Have a look on this thread. Xx

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GloomyEeyore

It was at the GP practice I asked two weeks ago. Receptionist couldn’t see a referral. The problem is if it hasn’t been done I don’t know if I could keep seeing my 🌟 (?) GP. Feel like the trust and confidence in him would be gone.

I have looked at that info that Baba posted. Have bookmarked the page so will have it handy if needs be next month. Xx

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misty14

I do understand how you feel re your 🌟GP if no referral done. I would feel the same but maybe go to see him and ask why it hasn't been done? Give him one last chance . Are you due to see him soon?. Glad you've seen baba's info. Hope you won't need it. Xx

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GloomyEeyore

No, I’m not due to see him. Unlike my old 🌟 GP he doesn’t make me appointments. I have to make them if I need them. Really don’t know heather to go back to him or see another GP. Have seen him once a month since April and each time was told he was putting in the referral. Last month he was supposedly putting it in as urgent. Maybe if I see another GP, who has access to all medical records, I would find out for sure if the referral has been done or not. Xx

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misty14

That's tough ge that this 🌟GP doesn't see you regularly like your previous one did!. Good idea to see another GP and find out if that referral was ever done!. You'll also see if there's another GP you might prefer. Good luck . Xx

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GloomyEeyore

My Mum is as annoyed as me about this whole problem. Today she got on the phone to the hospital and asked to be put through to maxillofacial appointments. No referral has been put in 😡 Now I don’t know what to do. I do know that I don’t want to see this GP again. Will have to see a different GP at the practice. I find this really hard because, as you probably know, I suffer from severe anxiety. The advice from the hospital was to go to the practice manager as this is medical negligence. Xx

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misty14

I'm really sorry ge you've been so badly let down!. It's specially tough when we have added problems like your severe anxiety!. Interesting the hospital said it was medical negligence and you should go to the practice manager!. If you can you do need to go to a different GP to get the referral done and the bonus might be you find a nice new GP who might become your next 🌟 It's really tough when our trusted gp's retire or leave. What would we do without our mum's ?. Best of luck ge, be brave!. Xx

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cuttysark

So miserable for you Misty having all this bother on top of your toe flaring as well!!

Totally appalling for folk to have to hunt around for the correct tablets. Life is hard enough!! xx

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misty14
misty14
in reply to cuttysark

Thanks so much Cutty, this really is too much for me at the mo and as you rightly say none of us need this added stress on top of being ill. Do hope your endoscopy went well and your injection gives good relief!. I just can't wait for my pain appt on Monday. Xx

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Hollydebs

Thank you for asking Misty14.

3 months later finally had letter from cardiology. Have an irregular heartbeat that pauses then skips beats. Unless I re-collapse they aren’t doing anything. Hey ho

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misty14
misty14
in reply to Hollydebs

That's a shocking long time to wait for resukts. Take care hollydebs with that irregular heartbeat. Xx

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baba

healthunlocked.com/api/redi...

See paul’s Update from July in pinned posts

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misty14
misty14
in reply to baba

Thanks so much baba for this very helpful info. Will show it to my pharmacist. Hope your keeping well. X

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panda2
panda2
in reply to misty14

Hi Misty,

Oh what a bad day. It's too much stress to have to worry about sick-making meds on top of the pain you are in. This is not what any of us need. And as you know I'm having the exact same problem. Chasing Zentiva everywhere -- to next towns even!

If you take a look at Paul's original post about this, all the way to the bottom there are a few more of us reporting new shortages starting about a week ago. As Paul's on annual leave now, I'm not sure if there's been a follow-up.

Misty, fingers crossed you get something tomorrow.🤞🤞 And fingers crossed we all get some answers. This is outrageous without explanation. I think I might write to the company myself!

Panda x

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misty14
misty14
in reply to panda2

Thanks panda for your lovely, helpful reply. You've got it worse than me as it includes HRT as well now.. We really shouldn't have to cope with this on top of being ill. Do hope you got your pills yesterday and you didn't have to drive too far!. We all ought to write to our MP's !. I'm sure I'll sort it out now I've had such a lot of good help from you all. TAKE CAREXx

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Neuronerd

I’m in the USA. I’m not having trouble yet. Do we know why they pulled the plug?

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misty14
misty14
in reply to Neuronerd

Hopefully neuronerd that will stay ok for you. According to lupus uk there shouldn't be a problem here so don't really know what's going on!. It's giving us stress we can do without!. Xx

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Neuronerd
Neuronerd
in reply to misty14

It’s the only med I can take so I’m screwed if they withhold it. Nothing else goes with my seizure meds. Other folks will be going to jail for heroin while I’m serving time for buying antimalarials on street corners. That won’t look good on my resume. 😂

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misty14
misty14
in reply to Neuronerd

Hi neuronerd

It's an apalling situation we find ourselves in thru no fault of our own, just being ill.

I've just read an article by one of our uk doctors explaining what's happening and why and thought it helpful to share. He's a GP himself and writes for the Times

He says 'there have been manufacturing problems in UK and Europe, doesn't mention US that have been resolved. Other reasons for this he says are a combination of a deapreciating currency, cost aware NHS looking to pay as little as possible. New markets abroad means the UK is no longer as important to Big Pharma companies as it used to be and he suspects that medicines are being diverted to more lucrative markets. A trend that isn't likely to stop any time soon. ' You've got a different set of economic conditions in US so hopefully you may escape this mess. We in UK have got prospect of Brexit looming and all that will entail. Fingers crossed for us all. Xx

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Wee1kirby

Hi misty, having similar issues. First time I got Zentiva just by luck and felt really good on hydroxy. Then I got Bristol and really affects my stomach and makes me feel dizzy. I already had severe ibs made worse by lupus. Went back to get prescription refilled and got more Bristol! Called my gp surgery and they were willing to specify brand but weren’t sure what was left, so went to Lloyd’s and they are currently supplying Bristol and recommended contacting an independent pharmacy so they could order something else in for me, or they would try to order another brand for me if no luck. Have asked the surgery to specify not Bristol brand on prescription, emailed a local independent pharmacy and they have Blackrock and are also willing to order in different brands if I give the scripts in advance. Hoping to pick up my new prescription today. Good luck, it’s an awful situation to be in and I really did try to persevere with the Bristol but the difference was so obvious sadly!

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misty14
misty14
in reply to Wee1kirby

Hi weekirby

Thanks for your great reply. It's very helpful as I've had the same experience as you with the brands. The Bristol gave me very strong side effects dizziness and awful headache whereas I'm better on Blackrock. My surgery and pharmacy are willing to specify the brands , it's whether they get them so may have to ring round pharmacies. Do hope you get your pills today. It's a worry we really don't need, being ill is enough. Xx

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cobsie

Neither Boots nor Lloyds get Zentiva brand as they are limited to which stockists they can order from. Local independent pharmacists have a choice who to order from. Zentiva started off stating no problems with them, then it was a warehouse issue, then the stockists weren’t ordering enough! After 9 weeks of trying my pharmacist has just managed to get me Zentiva brand hydroxy. I have emailed Zentiva for the 3rd time telling them that they are playing with peoples lives and that I didn’t want a generic response from them. They complied - I have had no response. When you hear HRT is in short supply and we know about hydroxy, add in some epilepsy medication and that is the tip of the problem. The B word has a lot to do with it and I am going to get onto my MP because I can’t do with the stress of not being able to get my meds in a reasonable time. Good luck everyone.

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misty14
misty14
in reply to cobsie

Thanks cobsie for your very helpful reply. I couldn't agree more with you. We don't need the worry of will we won't we get our pills!. Xx

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Angel2073

Just to let you know that you can buy plaquenil from any pharmacy in Greece without a prescription at a very low cost, just in case anyone travels to Greece....

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Treetop33
Treetop33
in reply to Angel2073

Very good tip thank you.

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tit4tat

No problem here, I also get the Bristol version. I've only ever had plaquenil twice in the 7 years I've been taking it

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misty14
misty14
in reply to tit4tat

Whereabouts are you tit4tat?. Glad you get them ok. Xx

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Boyden1964

It's not that they can not get the brand it's probably all down to cost. I used to work for a pharmaceutical distribution company. If you find a certain brand suits you better ask your doctor to write it on your repeat prescription must be zentiva or what ever brand suits you. I have this on my repeat prescription for an inhaler and it says must be ventolin. And have never been given a different brand. Hope this is of any help.

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misty14
misty14
in reply to Boyden1964

Thanks for your reply boy den. I have been putting the brand I need on my prescription and suddenly boots are saying they can't get it. Been working well. I'm sure I'll sort it somehow. Had very helpful info from you all. Xx

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Pippa999

Hi misty,

Can we be absolutely sure that Boots are telling us the truth about the availability of hydroxychloroquine?

Many Boots stores are being shut down and one wonders whether this particular local branch is too lazy, inept or lacking in initiative to source us brands we want?

The head office may have a different view?

Regards

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misty14
misty14
in reply to Pippa999

Good point pippa, I don't think we can trust Boots so well now because of what's happening to them. I caught the pharmacist out yesterday saying two different things. My dad enquired about the drug owing and the pharmacist said they were getting all the other brands ok apart from the one I needed. I rang him in the afternoon to ask about Zentiva and he said the only one he had was Bristol one which I can't take!. You just don't know what to believe!. I'm going in there with the lupus uk articles and see what they say. I've also phoned an independent pharmacist whose got the brand I need and gets it in no problem!. Big relief!. Hope you get yours ok and thanks for replying. Xx

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Pippa999
Pippa999
in reply to misty14

Thanks for your experiences with Boots.

Boots head office should make a statement on availability.

I personally do not use.

Poor repeat prescription delivery.

Always running out of lupus medication.

Too much unnecessary and stressful waiting.

Other GP attached pharmacies offer a much better personalised service.

Boots have gone downhill...😒

Regards

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Makimon

I’ve been trying to get hold of Zentiva too for the past couple of months. Bristol labs and black rock both give me nasty side effects and on Lupus UK’s advice I tried Zentiva hydroxy and I’ve never looked back. Unfortunately since the shortage I’ve had to take black rock and the side effects are taking a toll on me and it’s not pleasant at all! I work in a pharmacy and even we can’t get hold of it after repeatedly requesting it. It doesn’t sound like Zentiva are being honest with what’s going on as it’s still out of stock. Anyway I should stop moaning and just hope for the best something gets sorted soon!

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misty14
misty14
in reply to Makimon

That's really tough makimon specially as you work in a pharmacy!. I'm getting side effects on black rock too and Bristol is the worst for me. I want to try Zentiva, glad it's been the best for you!. Do you work in an independent pharmacy?. I've just phoned one and they've said they've got no problems getting Zentiva!. Trouble is we just are told different things and don't know what to believe!. It's a nightmare!. I do hope it's sorted for us all, it's bad enough being ill without this extra worry

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Makimon
Makimon
in reply to misty14

Hi misty14, Bristol is the worst for me and black rock is only marginally better so I know how you feel! I got our pharmacist to call Zentiva directly, they’re saying that there’s no supply issues. So we called our supplier AAH and they said we could order it so we ordered 6 boxes of specifically Zentiva and was assured they would arrive! Today on my shift I checked and our supplier has sent 6 boxes of black rock! We called them up again and they’ve changed their story saying they can’t guarantee what we get sent so I assume that Zentiva is out of stock! But I don’t know why Zentiva themselves aren’t being transparent about the situation as this is the same thing they’ve been saying quite a few weeks ago, according to them there isn’t a problem. I work in a small chain pharmacy but all my local pharmacies including independents can’t get hold of it either. Sorry that’s not much help, it’s driving me crazy!

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panda2
panda2
in reply to Makimon

Makimon, you are 100% right! I've had a lovely pharmacist at Tesco deal with these meds for me for 2 years. She has not ever had a problem until a couple weeks ago. She ordered and got Blackrock. She ordered again and got Blackrock. She ordered again and got Blackrock!!! When she phoned to explain this, I also went to an independent. I called every pharmacy in the area and finally got one's last 2 boxes in the next town. But god only knows where we're going to be in 3 or 4 months time. It's beyond disturbing.

I'm so sorry you're going through this too. 😔

Panda x

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misty14
misty14
in reply to Makimon

This is what's so disturbing makimon about this situation because we're not being told the truth and stories keep changing!. I really feel for you as a patient needing Zentiva and as a pharmacy worker trying to get drugs for patients!. It's such a stressful, nightmare we can all do without. Won't help our illnesses!. I really hope you get a supply soon. What part of country are you?. Xx

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panda2
panda2
in reply to misty14

MISTY!!!!! So pleased for you to have found that an independent stocks it! Maybe ask for a back up, because I do believe there is something wrong. But let's take these good days as they come. It's about 2 months worth right? And by then you'll know how this brand works for you and if it's the drug or the filler you are reacting to. This is good!

🐼x

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misty14
misty14
in reply to panda2

Great idea panda!. Do agree with you. Have a good weekendXx

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Kevin53
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misty14
misty14
in reply to Kevin53

Thanks for these articles Kevin. I'm going to take them to my local Boots and see what they say. I've found Zentiva brand at an independent pharmacy so big relief for now. X

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Kevin53
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weathervane

Hi there misty, sorry you’re having such trouble with your meds , it’s difficult to see what the problem is getting the right brand other than pharmacists keeping costs down. When i was on hydroxy i had a couple of different brands without any problems luckily, my son has been the same . Im quite lucky in that i seem to tolerate most drugs!! I hope you are keeping well otherwise and that all your family are well . Just had a busy month with 2 sons and girlfriends being home , I miss them now they gone , the house is too quiet , though the mess is less 🤣

Beat wishes and take care xxx

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misty14
misty14
in reply to weathervane

Thanks weathervane for your lovely message. This is a nightmare we can do without, being ill is enough!. It's galling too because Hydroxy has helped me get to 5.5 mg steroids a dose I've never been on and I'm so pleased I've managed it. I phoned a local independent pharmacy who said no supply problem and they had the brand I wanted. Big relief. Not sure what Boots is up to . Glad your son gets it ok, and it helps him. Hope he's still doing well. Must be hard after a month of visitors!. Glad you had a lovely time. Did you go to that wedding ?.

I've still got this painful toe and am seeing my pain Consuktant about it on Monday.. Have a good weekend. Xx

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weathervane

Glad you got your brand sorted, if you find a pharmacist that is helpful I would stick with them - mine is usually great with advice . We didn’t make it to the wedding as hubby had a problem at work, but didn’t mind as i was really tired that weekend.

I hope you have success with your pain consultant and you get toe pain under control as you can be on your feet all day long sometimes. Let us know how you get on, take care xxx

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misty14
misty14
in reply to weathervane

Thanks weathervane for your lovely message and good wishes for Monday!. I will do a toe update post. I've got high hopes my pain Consuktant will be very helpful on this!.

I do agree re pharmacists and have been with my local Boots for years as they've given good service and advice!. I've asked there again and in my local Lloyds pharmacy this morning and understand better what the problem with Hydroxy availability is!. The manufacturers are only sending batches of the drug out at any one time and the pharmacies don't know how many they'll get or which brand!. So if my prescription for it coincides with the end of a batch I will have to go to different pharmacies hoping they've got some!. Talk about Russian Roulette !. The independent pharmacies seem to fare better. An added stress we certainly don't need. Hope your having a good weekend. Xx

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weathervane
weathervane
in reply to misty14

Hi misty, meant to be going to friends party this afternoon, had intestinal strain last night due to meal of fish an chips in nice restaurant. I think fried food doesn’t like me !! Eating light today, party involves barbecue which I will have to avoid. Hope your weekend is going well , will be thinking about you on Monday xxx

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misty14
misty14
in reply to weathervane

Hope your digestion is improved weathervane and you enjoy the party!. I'm seeing my friends next weekend, been a long time !. TAKE CAREX. Do appreciate your good wishes. Xx

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baba

I think Boots and Lloyds at all owned by the same parent company now.

Unfortunately they are also running some hospital outpatients pharmacies as well.

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misty14
misty14
in reply to baba

Funny you should say that baba about hospital pharmacies. I'm going to ask at my hospital if they process community prescriptions!. We're just not told what's happening, we only find out when we suddenly have a problem!. X

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Hollydebs

Hi Misty quick update re Hydroxy

Just been to collect prescription for Hydroxy and different pharmaceutical make not Bristol ones. Black rock Pharmecuticals in High Wycombe. Although I don’t get affects from Bristol ones I prefer the Black Rock as they don’t leave nasty aftertaste. Black Rock ones are yellow rather than white.

Always had Black Rock previously but was told number of months back they had stopped manufacturing but tide has turned as had them today!!

Any developments on your prescription for Hydroxy??

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misty14
misty14
in reply to Hollydebs

Lovely hearing from you hollydebs. Glad you got your Blackrock Hydroxy today!. I too found it better for side effect strength but still had problems so took it every other day which was much better for side effects but not so good for my condition!.

I've just been able to get Zentiva brand from my local Boots and they were able to order it for me and it came!. They said it doesn't always so perhaps things are improving!. It's awful we're having this added worry. I'm hoping I'll be able to take it every day!. See my Rheumy on Tuesday!. Hope your keeping well as possible. Xx

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