I was prescribed a daily dose of hydroxychloroquine, alongside weekly methotrexate, when I was diagnosed with RA and Sjogrens 7 years ago. Two years ago I developed grey patches on the skin of my shins, which look like bruises but aren't tender to touch. I contacted my rheumatologist and sent photos of the patches (it was during the lockdown so couldn't see anyone face to face) and they said it wasn't related to the medication. Two years later and I finally saw a dermatologist who immediately diagnosed it as a side effect of hydroxychloroquine and my RA consultant told me to stop taking it. I've been off it nearly a week with no resurgence of joint pain but I can't believe that they kept me on it for so long without questioning the need for me to take it.
I don't really understand why it's prescribed in the first place as the consultant admitted some time ago that it doesn't help with the symptoms of sjogrens (which seem to be unpreventable).
I'm wondering if anyone else on here had similar experiences with 'staining' from hydroxychloroquine and whether other consultants have been more rigorous about cutting it out of your regime.
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DoraBracken
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Hi, I think skin discolouration is more common that you realise with RA drugs. I got it with Leflunomide, not the grey bruise but the brown tan colour on my face and neck. The rheumatologist stopped the drug at the next clinic appointment but the so called “post inflammatory pigmentation” stayed so now on factor50+ every day as it gets darker in the sun. M x
Hi Marie, thanks for replying. My consultant mentioned that she'd seen discolouration on the face but never on the legs and she hadn't been able to diagnose the problem. It was only because the dermatologist I saw had RA himself that he realised what it was. It just goes to show that little is known about the condition and side effects of the drugs.
Really interesting post DoraB - I have a couple of little grey patches on my face - one above my eye and one on my cheekbone. I haven’t had a close look anywhere else on my body though so there could be more. I just notice these when I put on make up. They aren’t very big, they look a bit like dirty marks, totally flat and don’t hurt of anything. Wonder if it is anything to do with the hydroxychloroquine? I’ve taken it since about 2014/5.
I just thought they were age spots or maybe were caused by the sun - to the extent I’ve started wearing a high factor sunscreen on my face as well as trying to stay out of the sun as much as possible.
Thanks for commenting. It might be worth asking to go off hydroxychloroquine. I'm not even sure what it's supposed to do and I've never had a good answer from any of the doctors I've seen. My consultant told me that it was just standard practice to start people on Methotrexate and hydroxy and see how it went. I feel that I want to take as little medication as possible so I'm glad I've been able to drop it.
Years ago I worked with someone who had lupus and she took hydroxychloroquine but I’m not sure about Sjorgens. One of the many c9nsuotants I saw years ago put “‘Sjorgens ???’ On the report to my GP - I’m sure it’s not though because although I’ve got the driest eyes ever my mouth is fine, loads of saliva.
I suggested stopping hydroxychloroquine last time I saw a visiting rheumy - most of the rheumy I see are passing through my hospital - never to be seen again - but was told to stay on it - I feel as if I’ve been on it for an awful long time.
I'm really lucky - during the lockdown I got a new consultant who has referred me to lots of different departments to sort out my eyes, mouth, skin etc. I actually decided to cut down on my hydroxy a while ago and was taking it every other day and not on the methotrexate day. My symptoms didn't seem to get worse.
My eyes are terrible too, OK at the moment but I go through phases of having real problems. Are you managing your eyes OK?
A word of caution. You have only been off the hydroxychloroquine for a week. Most DMARDs have subtle cumulative effects. It is possible that over the next month or so you may find that your RA symptoms return. I do hope for your sake they don't come back.
RA is a strange disease and we all respond differently to the medications
Thanks for the warning. I'll be cautiously optimistic but wary. I've found it so frustrating the lack of information about the treatments I've had since diagnosis. Actually, my symptoms have never been very severe and I'm on quite a low dose of methotrexate. My diagnosis came on the back of severely dry eyes during a period of extreme stress and the consultant was clear that stress was a major trigger.
I have not heard of this before, these drugs we take certainly have hidden surprises along the journey! I do know that you need regular eye check ups if on hydroxychloriquinine tho!
I’m taking hydroxychloroquine for Sjorgens and I thought the doctor says it protects me from progressing with other symptoms and maybe systemic systems as well as lymphatic issues with the saliva glands. I summarized it in my head as my Sjorgens insurance.
Hi Stephanie, thanks for your response. That's interesting. I've been told by some doctors that hydroxy doesn't work for Sjorgrens. I'm not sure they really know! I'll ask my rheumatologist about it next time I do, and the eye doctors.
Of course - we can only trust what they tell us. But that's why this forum is so useful as it shows that the doctors don't seem to agree on things.
Glad to hear that your RA is under control. I'm going to ask about the notion of hydroxy improving the effects of methotrexate and see what my consultant says.
Methotrexate is a very harmful drug and destroys the gut lining over time. My mother was horrified when I was prescribed it (she's a pharmacologist) but I have no choice. The rheumatologists brushed aside my concerns when I raised them.
I would be interested to hear what your rheumatologist says. I know what you mean about all the different information we learn here. I’m very grateful for it😊
Hiya Dora. I didn't have any such issues with HCQ, but I was only on it a year.
A quick check online to see if HCQ is used to treat Sjögren's brings up lots of info that it is sometimes used, in all cases it is the first DMARD mentioned. Too many links to add but the following are representative. This is from Versus Arthritis
Hydroxychloroquine is the DMARD that is normally used to treat joint pain, aching and fatigue. Other DMARDs that can be used to treat the condition include cyclophosphamide, ciclosporin, azathioprine, methotrexate. versusarthritis.org/about-a...
This is from Sjögren's Foundation (in the US)
Since Sjögren’s is an autoimmune disease where the immune system is overactive, medications that calm down the immune system are sometimes needed. Plaquenil is one of the safest drugs used to treat Sjögren’s. It can especially be helpful for Sjögren’s arthritis, fatigue, and rashes. sjogrens.org/blog/2021/ask-...
So maybe your Rheumy thought HCQ would be the best med to treat the joint/autoimmune symptoms of Sjögren’s, why you continued on it. That said I’d have expected him not to just dismiss the skin symptoms, or if in any doubt refer you to dermatology who of course deal with skin issues.
I hope this is of some help, though further reading may be more helpful to you to prep for discussing it with your Rheumy. I do think there's lots still to unravel about our associated autoimmune diseases, with you there.
I'll ask about Plaquenil but I'm very aware that big pharma does push drugs to doctors and foundations to increase profits. I'm not convinced there is anything that can really help with sjogrens and that managing the symptoms is the only way.
My consultant simply said that in all cases of RA, the first line of treatment is Methotrexate and HCQ and that most people come off HCQ after a short time due to the dangers of eye problems.
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