Saw the rheumatology nurse yesterday and she confirmed multiple joints swollen and tender despite being on maximum dose methotrexate and folic acid ! Adding hydroxychloroquine - she had to run past consultant first as I have recently been referred to ophthalmology for cataracts and Fuchs ethereal dystrophy- she was concerned as hydroxychloroquine can cause retina damage ! Consultant wasn’t concerned
Anyone else experienced this - worries me that being put on something that could potentially cause further eye problems !
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Pjf0265
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I’m on Hydroxy two tabs a day and have the very start of cataracts confirmed by my opticians the consultant said he wasn’t too worried about that , as it’s very early stages for me. They have said they will check my eyes regularly to make sure. Consultant also mentioned usually eyes can be affected after many years on hydroxy , understand your concerns. Having regular checks by hospital makes me feel better about it so that they can spot anything quickly. We are all individual in how these things affect us. Maybe have a chat with rheumy nurse on your concerns ..
Both those conditions relate to the cornea, and the risk with hydroxy is for the retina. And it is a minuscule risk that is really only considered a risk after 5 years when if on max dose you will have taken1kg of hydroxy!
Go to specsavers and get a retinal scan as a baseline and repeat every year to reassure you. £10 well spent.
The risk is generally thought to be low and only significant at high doses and/or after several years’ treatment. That said, it’s your eyes and not something you want to take chances with.
I was referred to Moorfields last year as I’d been on hydroxychloroquine for 8 years without any checks. I’d developed some visual disturbance and the rheumatology physician associate sent me to A&E. It turned out to be a vitreous detachment - probably age-related - but once I was in Moorfields’ system they’ve been incredibly thorough and attentive in checking my eyes. I had loads of further scans and will now get annual check-ups. Your ophthalmology consultants will let you know if there are any concerns regarding your existing conditions - they take your eyesight seriously too!
Hi. I have a special test done every year to check for eye damage, been on Hydroxychlorquine for 14 years and it is very efficient as a medicine for RA..am now slowly coming off it as I am on a biosimilar called Benepali and am often in remission. Good luck.
I didn’t go on it as I have psoriatic arthritis and hydroxychloroquine can bring on psoriasis. Just letting you know in case you have psoriatic and not RA.
My husband was on hydroxy for a few years(but not now). But one of the things his Consultant and Rheumy nurse were strict on is that he had an eye test check every six months. This was always mentioned on his record. Hope it helps you.
Hello Pjf0265 - Yes, I was warned about the possible damage to eyes. But my age had something to do with it. Hydroxychloroquine is not recommended for those over the age of 70 - or even over 65.
I see you are much younger than that. The warning came from the optician, but my then rheumatologist brushed it aside. However, being rather cautious, I took the advice of the eye clinic! There are, after all, other effective drugs for rheumatoid disease.
When you get different advice from different departments it can be very confusing; but since you already have problems with your eyes, you might want to consider it more carefully.
Thanks , I will be chatting to the rheumy nurse next week and I am sure when the referral comes through for the eye problems I already have they will advice me too
I just need to get the swelling and tender joints under control
I was going to be put on hydroxychloroquine but the rheumatologist decided against it because I am diabetic and a complication of diabetes can be retinopathy.
I was going to be put on hydroxychloroquine but the rheumatologist decided against it because I am diabetic and a complication of diabetes can be retinopathy.
I have RA and take mxt and hydroxy. The nice guidelines recommend regular eye tests at the 5 year mark due to the potential impact upon the retina due to a build up of toxicity. My rhemy suggested changing to annual checkups with my regular optician (with OT scans) until the five year mark when I will receive checkups via the hospital. In reality however my regular optician was not to pleased with this! Feeling it wasn't his job, one of those types There are benefits however to being on dual therapy rather than mono therapy in terms of RA and the research seems to suggest hitting RA with dual therapy early on in the treatment process can be more effective than mono therapy alone. So I view the increase in medication as the lesser of two evils. Also hydroxy has an additional benefit as it does not negatively impact upon your immunity levels as other immunosuppressants tend to do. So like you I was unsure initially but balanced the risks against the benefits and decided to move to dual therapy. Hope this is helpful to you and good luck on your journey x
I was diagnosed with RA in 2018 and put on mtx and hydroxychloroquine. I have a macular condition too, BRVO, but ophthalmologist said getting RA under control was top priority.
I then had rapid onset cataracts in 2019, but that was thought to be down to the steroids taken while trying to get RA under control. Both were central so my vision loss was sudden and dramatic. I was unable to drive. I had the cataracts done privately to avoid delay. I am still on hydroxy, 200mg daily, and I have annual eye checks.
I took full strength Plaquenil for 32 years before the first signs of retinal toxicity showed up. Because I was seen & tested thoroughly by Opthalmology every six months, it was caught quickly. We stopped the drug and there was no further progression of eye damage. As long as you can be followed & tested by respected ophthalmologist, familiar with autoimmune diseases & treatments, you should be just fine.
Thank you , I have a very good optician who has been monitoring me closely as I had a big eye change within a six month period and hopefully the hospital will monitor me too when I am referred !
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There are benefits however to being on dual therapy rather than mono therapy in terms of RA and the research seems to suggest hitting RA with dual therapy early on in the treatment process can be more effective than mono therapy alone. So I view the increase in medication as the lesser of two evils. Also hydroxy has an additional benefit as it does not negatively impact upon your immunity levels as other immunosuppressants tend to do. So like you I was unsure initially but balanced the risks against the benefits and decided to move to dual therapy. Hope this is helpful to you and good luck on your journey x
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