Hydroxychloroquine

[Quuen]

Just started 200mg hydroxychloroquine after being newly diagnosed and i cannot shake this nausea feeling! Any tips or tricks how to manage this as within the next month my doasge is due to be increased to 400mg? Not sure how I'm going to cope if this is only the lower dose 😔

[Star13]

Basically this drug needs to be started slow and steady, it’s not a race and better to take it slow rather than give up altogether.

Try taking it after a meal for a start. Also you could also try taking every other day to see if that helps symptoms. As soon as you can tolerate that then you can introduce another tablet and so on until you are on one every day. I had to start with one a week and it took me weeks to get on a full dose!

I’d stay on one a day until you feel really comfortable then gradually introduce the two a day by adding it just one day at a time. You do get used to it. Also it takes a few months to see any benefit too.

[Quuen in reply to Star13]

Thanks. I usually take it with food after lunchtime as im not a consistent breakfast eater. I'm not in a rush to take these tablets at all but just doing as advised. I started off fine 2 weeks ago but as the days seem to go on I am feeling the side effects.

[Star13 in reply to Quuen]

Try taking at night after dinner.

[Chris21]

hi Quuen, do you take it in the morning or night? It’s always been suggested to start a new medication ( unless it needs a specific time) in the evening .

[Jumper99 in reply to Chris21]

I’ve never heard that, no ones ever told me in 22 years of diagnosis, lol. I always take a new medication in the daytime so that I can get help more easily if I have a bad reaction.

[Chris21 in reply to Jumper99]

that’s a good point! Never really thought about it. One medication I took for UTI at night, next morning I had vertigo 😁 it’s GPs that have suggested it. 🤷🏼‍♀️ my dear old mum always said take them with milk it lines your stomach. How true that one is I’m not absolutely sure 😂

[Jumper99 in reply to Chris21]

my Dad always said that too! He had duodenal ulcers and he said it helped. Unfortunately I’m allergic to dairy!

[Quuen]

Hey. I usually take them after I have eaten lunch. I was instructed to take one every morning. I will try taking them in the evening after dinner to see if it helps with symptoms over the day. Thank you😊

[Krazykat26]

I had nausea n heartburn when I first started hydroxy. I started on 400mgs a day. I found that taking it with a glass of goats milk helped with the side effects. Hopefully they will ease off for you as you get used to them 💜🌈xx

[Spanielmadlady]

Hi.its a side effect of several lupus meds .for me the nausea lasted about a month so ride it out if you can .i hope youve had your eyes tested before starting hcq x

[StriatedCaracara]

Found it best not to have HCQ in the evening. Reflux when went to bed.

I have a bigger breakfast now, and afterwards take HCQ with milk/ smoothie mixture. No issues.

(Did have with lettuce based salad once and the tablet passed straight through me irritating my gut..Learnt then, that what I eat was important ...and need more bulky meal)

All the best.

[marypw]

Always take it after meals - the Zentiva formulation seems to cause the least problems. The Quinoric version tastes pretty horrible.

As above do get a baseline eye test. If you go to Specsavers, they do an OCT scan which will show up any problems with your retina.

[Oshgosh]

Have you considered asking for an anti emetic to help with the symptoms of nausea?

I’m on Nintenfanib for lung fibrosis .

I’m prescribed Prochloperazine 3mgms you put them in your gum and let them dissolve. I was given the typthat you swallow once .they didn’t suit me. I hope this helps

[Blossom751]

I take antacids in the morning, hence I need to take Hydroxy in the evening to space them out. However, I am still getting bowel bloating shortly after I take it even after dinner. It was worse in the beginning than now but it is one of the side effects for me.

[AgedCrone]

If you have one you need to speak to your rheumy nurse.Everybody reacts differently to all RA drugs, so when first diagnosed…..until you are prescribed the drug that really suits you it is vital to keep in touch with your rheumy team.

There is no need to suffer needlessly, but unless you contact your team to tell them how a particular drug is affecting you, they will assume you are doing OK on what you are taking.

Please remember - on here we can only relay our own experience of a drug, we cannot give any medical advice…..but hopefully hearing that you are not alone in having side effects does help.

[Lex54]

Hi I was prescribed Lansoprasole . I'm on triple therapy and it's helped immensely. Hydroxychloriquine helped me lots! Hope it settles!

[Ivonfield]

as you can read there are lots of different opinions all drugs are different for everyone unfortunately feeling sick for a while is better than no treatment stick with it in a few months your able to someone advice yourself good luck

Btw I’ve been on it for about 3years now

[Montysmum1]

HiAsk your pharmacy for different brands of makers. I went through 4 until I found one that did not make me feel sick. I now have a yellow card on my prescription meaning they have to supply me a specific brand....There are quite a few and I'm afraid like everything else it all comes down to costs with the pharmacy but do fight your corner on the matter, after all , you are not taking them for fun.

Montysmum

[Dressgirl52]

I take a stomach protector tablet in a morning which helps as I take hydroxy and steroids … seems to be ok

[dg70]

If you have Bristol labs quinoric that's probably the problem. I felt exactly the same on it, really sicky feeling. Bristol labs seems to be the brand that's offered first and the most unfortunately. I switched to Zentiva brand hydroxychloroquine and had no problems at all it tastes so much better too as the tablet is coated. Blackrock is good too. Only trouble is loads of us have had this reaction to any quinoric brand so Zentiva and Blackrock are low in stock. See Lupus Uk about latest information on availability of hydroxychloroquine. I have 'Zentiva brand only' put on my prescription but sometimes I have to ring around chemists to see who has it or will order it for me. If you're not on bristol labs then try another brand as they cause so many different reactions in us. Explain this to your GP and that the Lupus community has this brand issue as a known problem.

It does take many months to see any effects so stick with it but what its doing is dampening down your immune system so you don't get worse so quickly or less flare ups (hopefully). My dsdna went from quite high to normal within a year so hopefully my organs are now under less stress. I hope this helps.

[Hamptons]

I take it at night, after a meal. No nausea

[milkwoman]

This happened to me when I was taking generic brand and after 9 weeks I couldn’t do it anymore. I asked to be switched to name brand Plaquenil and have had no more issues. I was intolerant of the filler ingredients in the generic brand.

[Haylz2109]

Hi Quuen, I've just started hydroxychloroquine this week also but on 300mg so far I haven't found it too bad but I do take it with food and a glass of milk around 3pm each day. Perhaps worth trying with the milk to see if that helps settle the nausea. Hope this helps and good luck! 😊

[Potatoheat]

Been on it for 30 years. When I started I was on volterol tabs too, no advice about taking with food, so I had horrible stomach pains, weaned myself off the Voltarol . Thankfully things are better these days re advice. I take Zentiva used to be Plaquenil no longer available for a few years, but my pharmacy unable to get it at present, so hoping it won't be Bristol that I get. I don't feel sick just generally fast tummy. I have Omeprazole in the morning as i am on low dose steroid and Azathiaprine as well. Just had a small flare after Covid and antivirals , but I need to chat to my consultant , not sure I still need all these meds, I've been fine for 15 years !

They check my eyes every 1 to 2 years.

Hope you get sorted soon.

[Jances13]

Look up on google "Top tips on taking hydroxychloroquine for lupus " ( Ultimate guide Feb. 2023 )

The book is called Lupus Encyclopedia by Dr. Donald Thomas .

This article has helped me tremendously . He explains how to take it by starting with a very low dose .

I've taken hydroxychloroquine for 13 years and it was the best thing that happened to me . Then I started to get itching . Switched to different manufacturers but still had a problem . So right now am following his advice , so far so good . Hang in there !

Best of luck !

[jetjetjet]

it took me about 3 months 200 ml twice a day .

[Riselikeaphoenix_123]

Hiya, I felt the same on different brands. I take 400mg of ZENTIVA Hydroxychloroquine and I feel ok. What brand do you have? Quinoric made me feel sick, woozy and nauseous. Cx

[KeepingUpBeat]

Hi Quuen, I was not able to tolerate 400mg and stopped taking the medication after several months. However, when my Lupus symptoms returned during the pandemic it was restarted on 200mg the initial nausea subsided after six weeks or so. Hydroxychloroquine does not helped my fatigue or joint and nerve pain in my limbs but seems to keep my c-reactive protein at a normal level.

You don't say how long you have been on the medication because it can take up to six months to feel the true benefits.

[KeepingUpBeat]

As Riselikeaphoenix_123 points out I can only tolerate Zentiva and my pharmacy has this on their records. I get really bad nausea and feel out of sorts with any other brand. I know that Zentiva is hard to get and many people on this forum have complained about this. My last prescription was given to me in an unmarked box, the tablet package said Zentiva.

[Hidden]

Hi Quuen

The nausea can last a few months for some people but it does settle.

Some people find different brands of HCQ affect them differently and either improve or increase nausea.

Take the tablet just after your largest meal, preferably evening.

Make sure you still eat, even though you may not feel like it - try something small. Otherwise you can feel sick due to excess stomach acid brought on by hunger as you feel too sick to eat. Vicious circle!

It’s awful, but it does pass. I’d wait until your body adjusts to this drug before increasing it, if your Doctor is ok with this. Then when you do increase it you’ll not have so much nausea, if at all. ✨

[CerocEng]

As per Milkwoman, I was on Plaquenil first with no problem.....but once I started on the hydroxychloroqine generic brand I started to feel nauseous. My doctor put me back on Plaquenil and I had no further problem.....

[hootie26]

Are you taking it with food or milk?

[Jasmineteehee]

I’m so sorry you’re having such terrible side effects. I have recently been prescribed same medication. The taste is revolting, it does enhance the nauseating feeling. I now take the morning dose with cereal and milk, and the evening dose with yakult. I drink some milk or the yakult to coat my mouth first and then quickly take the tablet. It’s helped me keep it down.

I then don’t drink anything afterwards for about an hour, lots of water all day seems to help too. I am suffering with shortness of breath and anxiety symptoms, drinking more water is reducing the symptoms.