Hydroxychloroquine : Just wondered what everyone's... - LUPUS UK


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Sallyk21 profile image

Just wondered what everyone's thoughts/feelings were about hydroxychloroquine? I was on it for more or less 25 years then developed a skin problem all over my body (sebhoerric keratosis) I was referred to a skin specialist who suggested stopping hydroxychloroquine, which I did, however nothing changed. I was then told at a hospital appt some 18 months later that although my bloods were ok I should go back on it as it helped lupus patients with cardiovascular problems (I so far don't have any)! I went back on it but have now developed macular degeneration in one eye so although hydroxychloroquine hasn't caused this, I'm cautious so stopped it on agreement with my rheumatologist. I had an appt yesterday and saw a different doctor who I felt was trying to bully me into starting it again, but couldn't explain, in my case why? Just wondered what others experience was (sorry for the long post)!!!!

17 Replies

Hi sallyk21, you have been on hydroxy for a long time. I've been about 12yrs or so. Must say I hadn't heard of your skin prob, so googled it. I have been getting this for last few years on my arms and shins. I must stress it is very mild, but I did wonder what it was. Google says it can be ageing process. I am 52, and did fit their criteria. Am interested that Dermo says hydroxy could be the cause. As for eyesight, I know my hydroxy has caused my sight to deteriorate rapidly. Optician agrees, but Drs say it's age, so who knows. I never thought the hydroxy did any good over the years. I've always been on 400mg, and needed other drugs too. 2years ago the drug was stopped for 10mths, ( not because of side effects ). I had symptoms back that I had long forgotten, and realised it did help after all. Sorry not to answer any of your concerns, but have taken a personal interest to your post. Let's see if anyone can help.

Sallyk21 profile image
Sallyk21 in reply to

Thanks for your reply it was very interesting to hear what the docs have said to you! I've also been told some of my skin problems could be due to ageing (I'm 48) however that doesn't explain why I've had this for about 12 years and getting worse! And same as you the optician says the drugs could cause eye problems but the rheumatologist yesterday was adamant my eye problems are unrelated. Whilst I can agree it's probably not caused the macular degeneration, the last thing I need is a further eye problem. He didn't seem to grasp my concerns!


I am interested to read about this. I am not sure if I have lupus, and neither is my haemo specialist. I have seen a rheumatologist and they are not sure either, thinking my hughes' has worsened. However, they want me to start this drug to see if it helps vascular problems and black toes (!) I live very rurally, always have, and need a car to get to town, some 9 miles to my inr, and 45 miles to rie, my main hospital. The side effects of sight damage worry me a lot. I don't know what is best. If I take it, and lose sight, then licence, my world is effectively over. Your post interests me a lot. Good luck with your quest for answers, I will follow with interest. Take care.

Sallyk21 profile image
Sallyk21 in reply to Andrewl

Thanks for replying I'm interested in your comment about black toes? Do you mean your actual toes are black or the toenails? I ask because a few weeks ago I awoke to two completely black toenails for no apparent reason!

Andrewl profile image
Andrewl in reply to Sallyk21

Hi Sally, it is mt actual toes. I have a vascular problem in the main ileac(??) artery running into my leg. This has rough internal edges, which is not stentable if at all possible. The rough edges slow the blood down and make it vortice, and in doing so with aps it clots .........firing the clots down my leg, which are blocking supply of blood to my toes. The blackness to the flesh is loss of supply, and tissue damage setting in.........bloody sore actually. It settles when inr is above 3 at the mo. Hope this helpsx

I was on chloroquin phosphate for 8yrs then hydroxychloroquin 12yrs when thanks to a reply on health unlocked, I brought up with my new rheumy that I can no longer see 3d effect in films & se ref me to opthalmology... I have the toxic uild up on my retinas that the drug causes & ws told to stop immediately. Im still waiting on my 12mt follow up app because the build up continues to progress even after you stop taking it!

Yes, after I came off it my symptoms worsened but you only get 1 set of eyes!!!

I would say you know your own body & go with what feels right for you.

Sallyk21 profile image
Sallyk21 in reply to Nanuuk

Thanks for replying I was worried about the toxic build up as was recently told once it's there it's basically there for good so I will have 31 years of it but was previously oblivious to this!

I am sorry to hear about what hydroxychloroquine has done to you. At the end of the day you have to listen to how you are feeling all medication as they all have side effects. I was put on this medication because I used to be feverish all the time and it did not agreed with me so I stopped. There are other alternatives so speak with your consultant . Good luck

I have keratosis pilaris as a result of hydroxy - neither the rheumatologist nor the GP agree with me (in their eyes this drug does no wrong) but this thing appeared about the time the drug started to take effect, I doubt that's a coincidence.

Sallyk21 profile image
Sallyk21 in reply to Purpletop

Hi Purpletop was very interested in your reply as my doc seems to have the same opinion and I'm convinced the skin problem is drug related!

Hi - I have a diagnosis of RA but many symptoms of Lupus. I have tried Sulfasalazine and Methotrexate - the latter for 18 months with Hydroxichloraqine added in for a year. I couldn't tolerate

the other two so am now back on Hydroxy 400mg on its own.

I suffer from extremely dry eyes and am pretty long sited and an artist by profession so was concerned about this med when I first started on it almost two years ago. My optician wanted confirmation that I would only need 2 yearly NHS eye tests so I asked my rheumy about this.

He explained that on the doses it is given now (max 600mg or less) the eye problems are so rare that extra testing is not judged necessary. He said that the toxicity which can affect the eyes works cumulatively so that the longer a person takes it the more risk there is of eye problems. The risks therefore mean that over time a patient should be switched to a maintenance dose only and, depending on their body weight, might need to come off it after about six years - or be more closely monitored anyway.

For me it didn't do much the first time round with the methotrexate - but back on it after a gap of 8 months, and on its own - it seems to have taken me into some sort of remission which is amazing and rather bizarre. My ESR has dropped from 62 in November to 17 a week ago and I have no joint pain at all. However my chronic hives and eczema are flourishing so this post has got me wondering!

Hi, I have been on Hydroxy... for 27 years and had no problems until they swapped me to the 'generic cheapo' brand then my teeth went brown and had terrible digestive problems.

The original did however cause slight Glaucoma but my optician keep me checked every 6 months and don't have to pay for them checking. Sorry I can't be of any help but thought you might want to know what has happened to others. Good Luck.xx

I have been on the stuff for about a decade and it has given me my life back, certainly given me my hands back. Macular degeneration is an issue and if you have it then you will need close monitoring.

My feeling is that if you can tolerate the stuff then you should take it. Some sadly cannot.

Thanks Thaddeus the difference for me is I rarely suffer with joint problems therefore I don't feel or see the benefits others do as when I'm on it or not I feel no difference and my blood results remain unchanged thus being the reason I questioned it with the docs. I think my point is, in my case do the potential side effects out weigh the benefits

Hi Sallyk21

I'm a comparative beginner in hydroxy taking, a couple of years, having tried sulfazalazine, but I've had skin issues for as long as I can remember. The allergies consultant a few years ago..diagnosed urticaria and to take antihistamine twice a day forever...doesn't stop the itching, sceptic spots, hives, photosensitivity and skin crawling which have gotten worse since taking hydroxy. 'I'm one of the sensitive skin people' she said....that was before Lupus!

I have blepharitis, and have noticed that my eyes are very dry since I started hydroxy, but I have Sno-Tears from the hospital, these are brilliant and can be used as required.

Last year I was told that I will lose my eyesight in the near future....with significant optical nerve damage in both eyes and glaucoma...I asked my optometrist if the hydroxy will impact but he said that there's so much damage that it won't make any difference but was my eyesight ok, he would recommend 3 monthly checks .. my Rheumy has sent a letter asking for confirmation, so sometimes it seems they do communicate.

I personally don't like hydroxy, the stomach pains it gives me are excruciating..I have got a Hiatus hernia and rheumy gave me ranitadine but I dont get on with it....I prefer lanzaprinol..but can't have that as it reacts with another of my tablets. I've tried milk, porridge, full meals....it still doubles me up...rheumy says just keep trying....he was put out when my GP told me to reduce dose from 400mg to 200mg, and promptly told me to increase it!. Back at GP's soon so going to ask for a referral to check for ulcer/gallstones/IBS, but I will stop hydroxy if things get too unbearable.

I feel such a hyperchondriac these days as there's always something, but the interesting thing is, if you actually sit down and list everything, there's a connection, be it side-effect or diagnosis because lets face it, joints, muscles and nerves are the human body!!!!!

Sorry to have rambled...but I'd go with listen to your body and your own instinct.

Have you changed your prescription. Plaquenil is now off licence and when I was given Quinoric (not sure of the spelling), I started with rashes, which going back to Plaquenil stopped. I was diagnosed with Lupus in 1993 and started with Plaquenil about 5 years later to avoid another relapse. I'm now 67 and have been diagnosed with a macular pucker, which is not caused by the Plaquenil, otherwise my eyesight is not bad, in fact from 2008 they said it was getting better, which I found very strange given my age. Plaquenil keeps me on an even keel (200mg a day) and without it I start feeling not very well, nothing specific, just don't feel right.

When I was first diagnosed back in 1994 I was started on Hydroxy (along with a load of other meds) and continued taking it for the next 9yrs. My new rheumy discontinued it due the risk of eye damage, however the ophthalmologist said that Hydroxy rarely damages the eye and is a safe drug especially in the lower doses.

Six months ago I was restarted on this drug after the new recent long term studies on Lupus have shown Hydroxychloroquine to be very beneficial in the long term treatment of Systemic Lupus, preventing some serious complications, unfortunately I already have interstitial lung disease because of the lupus, however if it helps keep my lupus stable it's worth it. All patients should be referred to an ophthalmologist on starting this drug, and monitored regularly by them( not optician) to screen for any side effects early.

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