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/ SLE 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.
I’ve also been on it for 2.5 weeks now and had an upset stomach and actually today rather alarmingly passed bright red blood in my stool. Hoping it’s a piles issue or something separate. Going to keep an eye on things. Have also been REALLY tired and had a bit of blurred vision here and there.
I have had bloody stool too and thought it may be piles but as you have mentioned it as well I may give my doctor a call in the morning. The tiredness hasn't improved for me. Getting intense headaches and blurred vision too. Hoping I start seeing the benefits soon as the past week has been rough for me. Could be the weather though, got swelling and a lot of joint pain in my hands, arms, legs and back.
Hi. I started 400mg almost 2 weeks ago now. On 400mg, dose split between morning and evening. Had my eyes tested before taking and was given the Amsler chart by the optician to keep at home for frequent checking.
I experience nausea (even when taking with food) but it is not as extreme as the beginning (really had to hold back from vomiting the first couple days).
I had some skin burning within the first week, nothing major (I have lupus Timidus so rashes and skin burning is not uncommon for me) and this passed after a few hours each time.
I had quite strong abdominal cramping but could be due to menstrual cycle. I have had a couple of headaches.
I started to pass out yesterday and had severe abdominal pain. GP said my blood pressure (and pulse) is low and they are running bloods to see. Will update when I get results.
I have been up and down the past two weeks, having good days and some very bad days like yesterday but the GP advised to push through as the first few weeks of taking this medication is the worst.
I was told I did not need an eye test before starting but was asked yesterday by a GP did I have one. So I will be double-checking this with my rheumatologist. I did also find I have a reflux issue been very close to being sick but tbh reflux is something that started before taking hydroxy but it’s intensified.
It’s almost been 30 days since starting doesn’t kick in until the 3-month mark so still have a little while until I see the benefits myself.
Rheumatology are meant to be getting back to be too as I’m having a lot of swelling and joint pain at the moment. Will be seeing dermatology next week. I do get scabby like dark rashes in my hairline looks like I burnt myself with the straighteners at times. But haven’t seen one recently however my palms have been really flaky and peeling. They go red to purple with pale blotches and quite inflamed around my thumb.
Look forward for your update and hopefully we can support each other through this.
I have been on hydroxycloroquin for 1 and a half years now, but always on prednisone as well. The side effects I think I have been noticing from the hydroxyc. are not severe but they do play a part:
- When I first started taking them, I experienced some digestive issues but they quickly went away.
- I also experienced a bit of hallucination. I often thought I saw something moving in my peripheral vision, but that stopped after a few weeks (I had an eye scan after one year and my eyes were fine).
- I often have very weird dreams now; writing this now I realise it may be affecting my quality of sleep. Whenever I take it right before I go to bed I tend to have worse dreams.
- After I started these drugs, I became more vulnerable to HPV infections on my feet and hands and perhaps unfoundedly am blaming the plaquenil. Also have been dealing with low white blood count.
- I have also experienced heightened anxiety (I did not have anxiety before) but I mostly blame the prednisone, maybe it is a bit of both + lifestyle changes and the stress of the diagnosis
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