Hydroxychloroquine - nightmares?

Hope everyone has had a peaceful holiday weekend.

I recently started on one tablet a day of hydroxy - taken in the morning with breakfast. I was expecting gastric issues, as expected - have experienced stomach cramps, feeling very sick etc. I was not however expecting violent & disturbing nightmares.

I woke in the middle of the night with a racing heart & too scared to go back to sleep. I know I'm sensitive to meds & have reacted negatively to pretty much everything I've ever taken.

Has anyone experienced this? Is it "notmal"? I'm very hesitant to continue taking.

I asked my gp to switch my prescription last week to the Zentiva brand as a few of you kindly recommended, but she refused on the grounds that it's the surgery's policy not to prescribe brand meds due to expense. So if I wanted to switch it means waiting till next rheum appointment in the summer!

33 Replies

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  • That's a terrible policy for your practice to adopt and I'm unsure if it's even allowed?

    Hydroxy and Sulfasalazine gave me anaphylaxis and Methotrexate made me very sick even by injection and Azathioprine hospitalised me twice with Pancreatitis. So I'm now on Mycophenolate which is costing my GP practice a lot.

    So would your GP not prefer just to try prescribing the other brand, Zentiva, than end up having to prescribe you a far more expensive drug?

    I think I would take this to your practice manager if your GP persists in taking this approach. Some brands of meds contain fillers that some people cannot tolerate. I'm sure they have to adapt accordingly, expense or no.

  • Thanks for your reply Twitchytoes so sorry to hear about your journey with meds.

    I will follow up with surgery & see where I can get to!

  • That's great but, reading your reply below, how can anyone with diagnosed Lupus or MCTD, UCTD or SjΓΆgren's get made to feel like a hypochondriac by a GP practice? All power to you in standing firm as is your right! πŸ’ͺπŸ’ͺ πŸ’ͺ X

  • Ah thanks... I had gone in last week to follow up with several things... chest infection that's not going away, asking to change hydroxy meds etc - I did scuttle out of the office really feeling like I was taking up her time. She has been v supportive on some things but last week I felt she was rolling her eyes at me x

  • Yes I know doctors who get like this about drug brand intolerances - in fact drug intolerances generally! I recall how badly my normally very supportive former GPs - took my reactions to various nerve painkiller drugs such as Duloxetine and Gabapentin. My GP at the time told my husband "we are running out of options for her" when he phoned in a state of distress on my behalf. But withdrawing off Duloxetine with no support from GPs led me indirectly to four hospital admissions with Pneumonia, sepsis and Pancreatitis - I've never had a year like that before or since. So now new GPs and my neurologist are starting again on trying to convince me to try Pregabalin or Norotriptyline or whatever. My answer is no way will I risk having my brain pathways altered again or risk increase in dry eyes or mouth for possible pain relief.

    So I end up omitting to discuss pain or pain relief because of this. So they don't really know how bad my pain is for much of the time because I keep schtum and try to deal with it myself now.

    I take Mycophenolate, Levothyroxine and Losartan because I'm monitored on these and they don't mess with my brain! I take dyhydrocodeine and paracetamol for pain.

    Even good GPs can become a bit like bullies sometimes. To address this you could try writing a short, succinct, letter to yours explaining your experience of nightmares and telling them how they make you feel like a hypochondriac when you only want to try a different brand. I did this once with MTX and it worked very well and helped my GP to understand me better.

    I'm sure it's your right on the NHS to try and find a brand of Hydroxy you can tolerate. My first rheum was grumpy when I told him I'd stopped taking hydrixy because of anaphylaxis. He said I should have first halved my dose before stopping. He said in his letter that I was just trying to get onto biologic drugs for RA by refusing to go back on Methotrexate. Wrong!

    But the specialist nurse stood up for me to him as she has seen my face burn and swell with hives - he hadn't. My gp was annoyed with rheum too as he pointed out that anaphylaxis is not something to muck about with.

    And nor is your brain! X

  • Hi VanK, This is utterly shocking, I couldn't tolerate the generic versions of Hydroxy either and my gp was happy to let me try several, they made me nauseas, bad headaches and I was very drowsy on them, like you I have trouble tolerating many meds.

    I would be surprised if there was any difference in cost between them, in fact I think you'll find that Zentiva is the company that makes Hydroxychloroquine so it's not actually a 'Brand' it's classed as generic so your GP should prescribe it for you.

    Surely this is withholding treatment that you need at the request of your rheumatologist so this can't be right! If I were you I would look into this further and speak to someone else at the surgery and your pharmacy and if still no joy I would contact the rheumatologist via his/her secretary and ask them for advice, I don't think your rheumatologist would be very happy about this, you shouldn't have to leave it until the summer!

    Who is the manufacturer of the Hydroxy you are taking now?

    Diane🌺

  • I totally agree with Diane & twitchy πŸ‘πŸ‘πŸ‘πŸ‘

    I haven't had nightmares, but I do make sure I get Zentiva brand (mainly because any other make of hydroxy is MUCH more likely to aggravate my long-diagnosed upper GI conditions)

    I get my repeat prescriptions from my gp surgery's dispensary. It has provided me with Plaquenil & then Zentiva for nearly 6 years BUT just before Christmas the gp dispensary began to claim they couldn't get Zentiva. So i told me gp I need a double quantity due to complications getting Zentiva....so now she specifies 2 boxes of Zentiva on my repeat prescriptions. Then I found a chemist who can supply Zentiva a 30 min drive away in our biggest local market town...So when I need a refill prescription, I order a script for Zentiva from my gp surgery and take it to the capable friendly chemist for fulfilling 2 boxes. It's a lot of hassle, but worth it! So far this system has gone smoothly. VanK: may be worth trying?

    Hope you'll let us know how you get on

    πŸ€πŸ€πŸ€πŸ€ coco

  • Thanks for sharing your experience Coco, it does seem like the Zentiva tabs are the ones which cause least amount of side effects so definitely worth a try.

    Will get on it today!

  • Hi Diane, thank you for your suggestions. I felt like it was another request with my gp that was "too much" & left again feeling like a hypochondriac. I will follow up with the surgery this morning though and see where I can get.

    They hydroxy I'm taking is by Bristol Labs although I've just checked the box and there was also some pills by Black Rock as well.

    Are you taking hydroxy now or are you on something else?

  • Hello Coco, oow the lengths we have to go to to get our meds! I take Plaquenil but I'm lucky enough to get it sent to me by my sister in law in Kenya as it's available over there (malaria country). it suddenly dawned on me after months of struggling with generic last year and giving up on it, that they might have it over there. I'm able to tolerate it much better than any of the others albeit only 200mg. Of course I discussed it with my rheumy and he was happy as he understood all too well the difficulties that many people have had with the generic versions but I have to admit I feel a little nervous in case it becomes unavailable over there πŸ€”!

    Strange how one dispensary has problems and another not, I've had problems like this in the past too😩

    I even had a pharmacist tell me that Hydroxychloroquine are all the same no matter the manufacturer......wrong! I was shocked to hear a pharmacist say this......Grrrr!

    Hope you've had a very pleasant Easter weekend and not doing too much of that ironing that you love doing now πŸ˜œπŸ˜€πŸ€£πŸ’ƒπŸ»

    DianeπŸŒΈπŸ¦‹xx

  • πŸ˜† thanks, & yes: only needed to do my usual 1 hour of weekly Dancing While Ironing on Friday: PAINLESSLY thanks to the wonderful thumb braces!

    πŸ‘πŸ‘πŸ‘πŸ‘ spot on re getting plaquenil that way! I'm doing similarly to get my prescrip topical oral steroid: my gp writes a script which I send to my sister in the USA or take to Switzerland.

    These pharmaceutical supply issues fascinate me. I am ultra alert to this because when I do react negatively to a med, it's usually severe. I could ramble on at length about various examples, but sticking to hydroxy:

    - my Rheumatology clinic always prescribes generic hydroxy in our reports. So its patients have to convince GPs to prescribe plaquenil & now Zentiva brand. I queried this at rheumatology clinic lately...it was explained to me that if I show the consultant a photo of my Zentiva brand box, she will prescribe Zentiva brand in future reports....I have yet to give this a try

    - when my gp dispensary said it can no longer get hold of Zentiva brand hydroxy, I asked several of my more local chemists whether they could get Zentiva brand. All said no! My impression is that the main diff between these small chemists + my gp dispensary and the FAB ultra popular & busy pharmacy/chemist in our biggest market town is "mind set": this bigger place always gives me the impression it WANTS to do business & help customers...the staff always look interested & seem positive about flippin everything I talk to them about....so this is my Go-To supplier: eg If my GP ever says I must have generic myco mofetil instead of cellcept, I'll ask this pharmacy/chemist if it can get me cellcept!

    These supply issues haunt me....seems to me that one of the greatest things this forum does is help us share tips on how to get hold of our meds

    πŸ€πŸ˜˜πŸ€πŸ˜†πŸ€πŸ˜˜

  • So interesting hearing about supply of one drug! I had no idea really there was a difference until coming on here. I'm so intrigued to learn about an area I really have very little knowledge about.

    ExtremeDuvetDaze I have connections in Kenya too... will keep that one up my sleeve in case i need to use in the future! Funnily enough, we used to travel to Kenya every year when I was a child, so had a run in with anti malarials from a tiny baby onwards!

  • So interesting you & antimalarials have history!

    At first I was aghast at the thought of taking hydroxy for ever...but the benefits impressed me in only the first few days! A few years on, I had to pause hydroxy for 5 months due to sinister bone marrow blood results: oh boy did I miss hydroxy! Now I really do know how much it's helping me, am a HUGE fan....so long as I can get hold of Zentiva brand

    My first BIG intro to these sort of diffs was when I was on daily high dose flucloxacillin for 5 months a few years ago....flucloxacillin was particularly unpleasant....especially hard on my upper GI. Someone here suggested I get my dispensary to supply me other manufacturers' makes because each firm uses different fillers. OMG was that a GRRRRREAT tip: I sampled several brands and did find one I could tolerate more easily...as a result, i'll NEVER submit to taking a make of med I'm tolerating poorly without pressing my medics to let me find out whether another make is more tolerable πŸ€πŸ˜˜

  • Hello VanK,

    Same here with Antimalarials I've taken different ones in the past on my visits although when I was on Plaquenil years ago I didn't travel to malaria areas I was just in Nairobi or staying nearby.

    Where abouts are your family in Kenya?

    My sister in law buys Plaquenil over the counter out there but she has to show them my repeat prescription which still has Plaquenil on it from last year, I'm sure if it just said Hydroxychloroquine they would accept that too, the pharmacist also writes a prescription/receipt thing so if customs open it they can see it's all above board.

    Yes we learn a lot from each other on here don't we.

    It sounds like they've given you two different ones although the active ingredient Hydroxy will be the same the fillers are different.

    Does the Bristol labs Hydroxy say 'Quinoric' on them?

    The fillers do vary in Hydroxy by Blackrock and Hydroxy by Bristol labs, I've just checked my list, I've tried both of those, which one have you taken so far ?

    Btw I think we all think that our Drs must think we're hypochondriacs...we're not we just want to feel better!

    Diane🌺Xx

  • Hi Diane,

    I have connections in Nakuru & also Nairobi. Haven't been myself for a few years (too many) but have extremely fond memories for all of my childhood.

    Stupidly I took a few pills from the Bristol tab and one of the BR (I just reached in the packet not paying too much attention), only noticed the different manufacturers yesterday am! Pretty sure it was the BR one that gave me the night filled horror stories.

    Thanks - yes, it can feel a bit of a struggle just wanting to feel better! Am learning (swiftly) to manage my own health... in so many ways x

  • My family live in Nairobi, I have been to Nakuru too, I long to go back but there's no way I could do the flight at the moment unless it was business class!! I haven't been for a few years now due to health 😞, But my daughter and son in law to be are having their honeymoon their In September, a few days on safari, some time with family and a week in Zanzibar....sounds perfect to me 😍🐘🦏

    D🌺Xx

  • Diane, I can't imagine flying long haul at the moment either! A few hours can be a challenge. I really long to go back to those Africa skies though, such good memories. I'm sure it has changed significantly since I was there - I've heard Zanzibar is stunning. Dreamy white beaches and turquoise Indian ocean! We can dream...

    Vanessa x

  • Yes at least we have good memories and like you say we can dream.....who knows some day...🐘Xx

  • I think you're right Coco about the 'mind set', I have a pretty good pharmacy too and my GP is very understanding of my intolerances, I did see a different GP on one occasion who when I ask him for my Imigran he gave me sumatriptan I handed him back the prescription and told him that I need Imigran and that sumatriptan doesn't work for my migraines, he promptly told me that it's the exact same thing, I told him it that it quite obviously isn't because they DON'T work! He reluctantly changed it to Imigran but also told me the huge difference in cost between the two! If the cheaper one worked I would be very happy to take it!

    My friend also has to buy in her NDT (natural dessicated thyroid) because she was so ill on Levothyroxine, in the end she did her research and ask her GP if he would support her by checking her bloods more regularly, she also spoke to her endocrinologist too and it's changed her life around, she still gets tired but she has her life back. Apparently they used to use NDT years ago which was very well tolerated until the 70's when they started manufacturing synthetic thyroxine.

    I'm sure that for me the issue is the fillers rather than the main active ingredient, because I wonder how can I be so intolerant to pretty much everything even some supplements that contain fillers !

    It shouldn't be a struggle should it and so many of us have intolerances, after all these drugs are alien to our bodies so finding the right one should not be an issue for the Drs. I know they have to work within a budget but......!

    Happy days...πŸŒΊπŸ’ƒπŸ»πŸŒˆπŸ¦‹πŸ’ƒπŸ»

  • exactly....

    GRRRRRR: your imigran story has got me going......

    Am so glad to get your views on this...helps me stick to my convictions...

    πŸ€Ήβ€β™€οΈπŸπŸ€πŸ˜˜

  • Experiences teach us so much don't they even if they leave us frustrated and infuriated sometimes 😩 and exhausted😴,! I just wished there were more natural products available with less nasties in them....drug manufacturers have all the control!

    Onwards we go...πŸ¦‹πŸ’πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»

  • I had a bit of a run around yesterday, long chat with my chemist who doesn't think the filters would give you any side effects! I can't understand his line of thinking but suggested I try a different med rather than a different brand of hydroxy. He did, in the end. suggest trying plaquenil. It was a frustrating conversation.

  • Grrrrr how frustrating for you, I would try a different chemist if they're suggesting trying a different med altogether when there are different manufacturers making Hydroxy and so many people can't tolerate one or two of them but most often can tolerate the other usually Zentiva! Plaquenil which is made by Sanofi Aventis has been debranded in the UK and you can no longer get it here, I would be very interested to know if your chemist thinks he can ! Their sister company Zentiva now make Hydroxy which has the exact same fillers etc in it as Plaquenil which is why so many people can tolerate that one much better, the proof is in the pudding! Sadly for me I wasn't able to even tolerate Zentiva but I'm ok with Plaquenil so I think there's something different about the filllers whether they're cheaper fillers or where they're sourced from, I've no idea but I just know there was no way I could have carried on taking the others, even my rheumatologist agreed with me and said they're not the same and he has patients that were doing fine on Plaquenil but couldn't tolerate any of the generics, but Zentiva is the most tolerated of all the generics.

    It's trial and error going through them to see which suits but if I were you I would push for a prescription that says Hydroxychloroquine by Zentiva, it's not branded its generic.

    Intolerances are a pain in the butt!

    Good luck and let us know how you get on.

    Diane🌸Xx

  • lupusuk.org.uk/hydroxychlor...

    Hi VanK , I've just come across this helpful article on Lupus UK, it's been recently updated too.

    Diane🌺

  • Thanks for this, I will print out a copy! x

  • Hi Diane, didn't get very far with this yesterday... however did look up the ingredients of that particular hydroxy and it is quinoric.

    Still trying to get in touch with the rheumy who saw me! x

  • Hi Vanessa, I think Quinoric is the least tolerated of them all. I'm so sorry you're having such a difficult time, I really don't understand some Gp Surgery's attitudes and why GP's have to differ so much.

    I hope you get somewhere with it really soon or we'll just have to go to Nairobi where things are simpler πŸ˜‰, btw it's quite amusing as the pharmacy my Plaquenil comes from is called ' Belladona', (wouldn't mind a bit of that at times either!) I've been in it it's great and they will go to all lengths to help, it's such a pity some of our pharmacies don't have the same attitude!

    Don't give up...

    Hugs

    Diane 🌺Xx

  • Ha ha ha! Willing to go to any lengths Diane!

    Thanks you so much for your support xx

  • You are most welcome Vanessa, we're all here to help if we can, I couldn't have got through the last year without the help, advice and support of this forum.

    Fingers crossed you get some joy soon.

    Keep us posted. Hugs🌺Xx

  • Have you tried phoning your rheum or there secretary. Then you can ask for the change. Your dr doesn't sound very helpful is there another you could see. You need support from your dr not hassle 😘

  • Thanks Sheilascrystals yes I've left a message for the secretary. May need some chasing up!

  • Hello. I do feel for you as I have problems with most medication and the only hydroxy brand I can tolerate is zentiva. Fortunately my surgery was sympathetic and they order them in for me. I can't understand your GP not being aware of differences. Can you get in touch with your specialist and explain the problem? GP's really do need some training in auto-immune problems!!!!

  • The GP's surgery won't change this prescription as its my first, so I've gotten back n touch with the rheum (although this is proving complicated as mine is on maternity leave, so I saw a registrar.

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