hi been told by my rheumatologist I need to start taking hydroxychloroquine and wear SPF50 daily. I haven’t officially been diagnosed with lupus but I assuming this may be the case. Been given an appointment to see them this week. I just read up some of the side effect for hydroxychloroquine and it’s actually giving me anxiety as I feel I already having these issue tiredness, headaches, skin rashes etc.
For those on hydroxychloroquine how has your experience been taking it? I understand that it’s meant to reduce the amount of disease flares and delay uv light absorption but how are you managing the side effects? Does your body get used to it, is there alternative if it didn’t agree with you?
***UPDATE***
Thank you for all the comments been very helpful and gave me a lot to discuss with my rheumatologist.
Been diagnosed with UCTD by rheumatology whereas immunology as MCTD. waiting to hear from dermatology as they will probably be the ones to determine the final diagnosis. In the meantime on 200mg hydroxychloroquine twice a day to manage flares. Been advice to give it at least 12 weeks and see how I go. If I feel it’s not agreeing with me we can try something else.
I did discuss the eye damage stuff mentioned below and was told I do need to tell my optician I’m taking it and they will know what to look out for at my yearly check. At the 5 year mark there will be an eye review with an eye specialist at the hospital. That’s when an alternative may be considered or continue. If you stay on hydroxychloroquine after 5 years then should have yearly eye specialist check + normal optician checks.
I have started taking it today, fingers crossed I start to feel better in a several weeks time. 😅
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I had some tummy upset in the first couple of weeks, and headaches. Now I've been on it for several years and don't even know I'm taking it. It's generally a well tolerated drug.
Look at the list of possible side effects of paracetamol. You're no more at risk from hydroxychloroquine.
My local hospital ophthalmology dept runs a dedicated hydroxychloroquine clinic to check for retinopathy issues. It’s a 12 monthly checkup up. I recently had one which involved eye scans. Although I am not on hydroxychloroquine anymore, I’ll still be called for another check in 12 months time as it apparently takes about 12 months for the drug to leave the body.
My own optician (independent not chain store) sees me every 12 months too and he’s checks my eyes too for this. Interestingly he commented last time I saw him that the retinopathy issue is not as rare as it was originally thought, hence the new hydroxychloroquine clinics.
If your eyes are being checked every 12 months then any issues will be picked up early. It’s still rare though.
I’ve been on hydroxychloroquine for a number of year and have been absolutely fine I would say the only side effect I have is tiredness but again that can be the illness. However I feel the benefits out way the side effects. I was 1st put on hydrocortisone for rheumatoid arthritis & was only diagnosed with Lupas 2 years ago. Hope this helps
I’ve been on it 14 years and no side effects. I think it has stopped any progression of lupus although I still have all the aches/pains/fatigue.
I have just been put on NHS annual special scans, I also get the OCT scans annually at the optician and when I saw her recently, I was told to do an Amsler grid test every week at home. (Just Google that -it’s very straightforward).
At the beginning of taking hydroxychloroquine I had an upset stomach but being told to take it straight after breakfast it stopped any symptoms. It's worked for me but give it a while to get in your system. You'll still get flares aches pains but not as severe. 😊
Takes many months to fully work and see the benefits. For me it does help my fatigue. When I have stopped hydroxychloroquine for a couple of months recently my fatigue was a lot worse each day. It works by dampening down your immune system so giving you some protection from organ damage etc. If you don't get on with your first prescribed brand of hydroxychloroquine, try another. I had stomach issues with Bristol labs hydroxychloroquine it tasted foul too. I switched to Zentiva after reading about it on this site and have no problems at all with it, it's coated too so no foul taste. I hope you get on OK, it's the first line of defence the next drugs are stronger with more side effects.
The rheumatologist did mention that we may try changing the brand before the medication. Been given Zentiva so hopefully I can avoid the stomach issues on this trial.
Hi it helped greatly with my joint pains.intially like others fatigue stomach issues .currently I have a few issues after 6 months not sure if related to hydroxychloroquine but having these addressed. Medics a bit dismissive. Dose was 400mg lowered to 300mg which it should have been for my weight.I have Raynauds and rheumatoid arthritis I keep a look out for eye symptoms I have searched reviews extensively most people if they get a reaction get eye issues or a rash. It works for a lot of people.
I've been on it for several years, I had headache stomach pain and rashes, temporary blurred vision but the symptoms went away after about 2 months of consistently taking. I noticed that if I stopped for few months and restart the medication the symptoms return. It is worst to get a flare than not take the meds with a few symptoms.
hi. I’ve been taking hydroxychloroquine for 31 years as a mainstay of my lupus treatment. I’ve not had any side effects and it does seem to limit disease flares and fatigue. I do get annual retina checks to be sure there’s no drug build up in the eyes and have not experienced any problems at all. Avoiding uv and using good sunscreen is very important as I know overexposure to uv does cause me flares and nasty itchy skin. Wishing you all the best
Hi there, I’ve been taking hydroxychloroquine for around 40 years and have never had any side effects. I used to get my eyes checked by a consultant once a year but that stopped a long time ago as there were no signs of any damage. I have regular eye checks at the optician as I wear glasses and they check the back of my eyes.
I tend not to read all the possible side effects when I have to take a new drug, I used to but it made me really anxious. Now I’m really aware of my body/brain etc and pick up on any new sensations, then I look and see if they’re in the side effect list 😄
thank you for your comment it's reassuring. I have more faith that the pros outweigh the cons. I am willing to give it a fair shot to see if works for me.
Zero side effects and up until recently think it has done its job. My eye appointment has come through but not sure I need it as I have an unrelated eye problem being seen in August, they will do the same imaging (different hospital). Good luck 👍
My stomach is acting up and can get intense headaches from time to time. But hasn’t been too bad. The tablets is nasty to take and doesn’t really taste the best. Can feel extra tired but that could just be the weather as it’s been warmer. Hope it goes well for you and let me know how you get on too.
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