Hi everyone, I’m new to this forum. I was diagnosed with SLE 8 years ago and this is the first support group I have joined. I would appreciate some advice about taking Hydroxychloriquine. I’ve been taking 200mg per day for 3 weeks now for my SLE and I’m really struggling with the side effects. I’m feeling persistently nauseous and suffering with headaches, some times migraines on a daily basis. Just wondering if anyone else suffered like this and if the symptoms will settle in time?
appreciate the help x
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aweebitoflove
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Hi.yes I did it all lasted about a month.i did get it back again when my hydroxy was increased to 400 mgs but only for a few days. It can take several months to gain full effect so be patient. Dont forget your eye tests too.keep going xx
I had various severe reactions to Hydroxychloroquine in July/August 2022, lots of side effects, only managed about 3 weeks on it. Advised by Rheumatology to stop taking it immediately. I could not tolerate it at all, horrid stuff which I will never take again; It does not suit everyone.
Suffering whilst taking a medication is not the answer, not for me anyway …. Enduring the symptoms of SLE Lupus is bad enough!! I don’t need to take a medication to make me feel worse than I already do 🙃
Hi, I do sympathise with you….. I was diagnosed with SLE in early November and started in Hydroxychloraquine 200mg twice daily. Initially I felt awful, so much worse than I did before I was taking it. Like you I had headaches, felt sick and just generally felt awful, but I stuck with it and am pleased to say that gradually the side effects improved. I’m 9 weeks into taking it now and am just starting to feel very subtle improvements in my Lupus symptoms which is reassuring.
make sure that the doctor writes on your prescription Hydroxychloroquine from the Zentiva company, this is the sister company to the company who used to make placqunil the pharmacist may tell you that they are all the same but the cheaper brands have different fillers which cause more side effects good luck
I was the same when I first started taking hydroxy, I felt awful on it. I went to my GP who suggested taking only 200mgs after food then skipping it the next day, I did this till I eventually went back up to my 400mgs a day., it probably took longer to have an effect on me but it worked for me. Been on it for years now with no problem.
It may have been said but I had the issues you have as I was first given Bristol labs/quinoric hydroxychloroquine. With advice from this forum I changed to Zentiva brand hydroxychloroquine for the next prescription last March and had no further issues. It took about 6 months for me to see a little benefit but it was pointed out the benefit may be your symptoms don't get worse and my DSDNA result after a year had dropped to nearly normal. I asked the GP to put Zentiva brand on my repeat prescription and have got it ever since. This may not work for you but it's worth a try or you may already be on Zentiva in which case trying another brand may help. Your GP may tell you you can't choose your brand but it's rubbish, you can and it's printed on my prescription every time. You learn to put your foot down about things with GPs when it's needed or you get palmed off with treatments that make your sicker sometimes. Hope that helps. Welcome to this helpful forum. If you're in the UK, Lupus UK has excellent groups around the country. I am a long way from the nearest group but generally they meet every month on zoom as well as face to face every few months. They have guest speakers and subjects we can all take part in if we like, it's been a great education on my condition. Worth a thought😄
Hi aweebitoflove ( fab name) yes Hydroxychloroquine does make you very nauseous initially but it does wear off. I found I was suffering with acid reflux, very burpy from both ends 😳 and occasionally a bit giddy. I took 400 mg for nine years happily once it wore off and strangely when I restarted 200 mg a few months ago after a years break I had no symptoms. Can I ask what brand you have been given? The Quinorec brand gives me diarrheoa I just cannot tolerate it and I am not alone . Be sure to get your eyes checked regularly as Hydroxychloroquine can affect your vision. Specsavers have hospital grade scanners for £10. Good luck 🙂xx
I’ve been given Quinorec which seems to commonly cause side effects from the feedback to my question. I will ask my GP for an alternative brand and hope this helps, thank you x
When I was diagnosed and prescribed Hydroxychloroquin, I was sick, my face became swollen. I went to A&E and complained that I was reacting to Hydroxychloroquin. I was kept in the hospital for a couple more days to see a consultant. When I met with my consultant on the ward, I told her Hydroxychloroquin has made me sick but she looked at me tenderly and said I was already very unwell before I started taking Hydroxychloroquin. I have been on it for 11years now and I have headaches, get sick, feel unwell but I believe that comes with lupus. My doctors have never taken me off the Hydroxychloroquin. Talk to your consultants and find out if you are reacting to the medication or your lupus is flaring-up. Take care and hope you feel better soon.
plaquenil (Hydroxychloroquine) takes 4-6 MONTHS to begin to help with ie: JOINT PAIN, Fatigue, etc.
But staying aware of SIDE EFFECTS is bmvery important.
“Most people” can handle hydroxychloroquine - fairly easy.
We do see results within “4 to 6 months” in HELPING the lupus symptoms lessen and “keeping LUPUS at bay” from attacking major organs.
You are describing DEFINITE SIDE EFFECTS - that should be discussed w/RHEUMATOLOGIST. Usually these symptoms go away after a FEW WEEKS - so not uncommon.
It should be “taken with FOOD” to help with STOMACH SENSITIVITY.
Are the MIGRANES “new”??
I don’t see them LISTED AS A “side effect”, but they can definitely be a LUPUS SYMPTOM. I have several lupus friends with HORRIBLE MIGRAINES & they work on trying to get Medicine SEPARATELY for the Migraines (SUN CAN cause Migraines- fyi)
I would CALL the RHEUMATOLOGIST to discuss these symptoms- (one friend could NOT take it at all because of STOMACH ISSUES)
I hope this is not the case for you, because hydroxychloroquine is the “mildest” medication for lupus versus all of the others that we have at our disposal to try.
OUR EYES TOXICITY TEST is usually the main ISSUE to stay on top of EACH yr with a PERIPHERAL FIELD VISION TEST w/ophthalmologist.
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