I'm now taking Azathioprine but for 9 years I took a fairly high dose of Hydroxychloroquine. No side effects at all except it's caused permanent damage to my eyes and left me with partial vision which, 4 years after ceasing the medication, still goes through periods of progression (in the wrong direction!). I know that as a result of mine, and others, diagnoses changes have been made in that all users are recommended to have a baseline eye test and then regular 5 yearly tests after that.
I'm just curious to know if there are others out there who've suffered the same thing and has their sight stabilised yet
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Hetty56
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So sorry for you. Your medics should have advised to cut the dose.
My ophthalmologist advised me to halve the dose (about two years ago) from 400mg to 200mg per day. But was on 400mg/day since 2015/16.
I already have background diabetic retinopathy and have had laser surgery on both eyes. My recent retinopathy screen shows “arrested retinopathy” so no need for anymore laser treatment...for the time being🤔.
HCQ is a highly toxic drug which builds up in your body.
The problem with retinopathy development is that it’s invisible to us patients😢😢. We cannot examine our own 👀 so it’s scary and we all need good ophthalmologists👍☝️
They seemed to know so little about the effects as well. My concerns were ignored for a long time and it was only when my vision became so poor that I was taken seriously and by then it was too late. It's also one of those conditions that seems to be static and then suddenly to progress - I'm going through a change at the moment so will wait to see what the results are after it settles down again.
My ophthalmologist was unsure whether it was the HCQ OR the bad BG control of my diabetes that was causing the retinopathy?
Basically the tiny capillaries in the retina can ooze blood or leak hence the blurriness in vision and loss of acuity but he wasn’t sure?🤷🤷🏻♂️
I’ve got to accept all these floaters like gnats in front of my eyes😢
So he said, “let’s halve the dose of HCQ” just in case.
My lupus is well controlled and my vision seems stable at around 3/4 sight. I’ve always been myopic and find the iPad a wonderful piece of kit for me and others with impaired vision.👍
Hi so sorry you’ve been left with vision problems, I also took it for about a year but had to come off of it as it made my vision very blurry, after I stopped thankfully my vision came back ok but even now I have to have my eyes checked once a year x
I'm having similar problems on hydroxychloroquine. Been on it for 9 months and keep getting intermittent blurred vision. Some days I have trouble focusing and it feels as if I'm looking at things underwater.
Ophthalmologist couldn't find any toxicity. It's been happening since I started hydroxychloroquine and it's bad enough some days that I'm thinking about switching drugs.
Yes that’s what I had with the blurry - I was sent to eye hospital in the end it’s then that I came off of hydroxychloroquine I thought my eyes were too precious to me - I’ve been on Methotrexate for 4 years now - if I was you I would change meds xx
Hi Hetty, I was on Hydroxychloroquine for nearly 14 years and had to come off it as I have lost peripheral vision in my left eye and have partial peripheral vision on right. It was out of the blue my rheumatologist consultant asked me how long I had been on the drug and sent me to have my I checked! I’m now on Methotrexate but still have appointments to have my eyes checked!
That sounds very similar to mine. Mine was only caught because, after my concerns about poor vision being ignored, I suddenly got a white flashing in one eye. I'm taking Azathioprine which means 3 monthly blood tests to keep an eye on my liver (or is it kidneys?) but that seems to be keeping the Lupus at bay
Dear hetty, I have been on hydrochloriquine for 12 years and I have had so many problems with my eyesight. Especially my left eye. I lost sight completely in it for about 2 months then it came back. But it has left me with damage to my eyes. I thank god it came back but it's like looking at shimmering water through my left eye. I hope you are ok. Take care all. Xxx
This all sounds so familiar. With my eyes it's a constantly moving circle which I can't see through. I've got a pinprick of central vision and some peripheral vision but there's a big gap between the two. I was told this is very rare which is why I wondered how many were affected and how.
Hi Hetty56 I too have been suffering with eye problems following taking hydroxy and Cloroquine for over 13 years. It has been over a year now since being diagnosed with retinopathy and the vision seemed to stabilise but now seems to be getting worse. My eye sight has always been poor from childhood but I feel so upset that this has happened to me and I really feel I should have been advised better. I was having 6 monthly opticians appts and regularly voiced my concerns but these just fell on deaf ears. I now worry about all the meds that I am taking and worry that these could be making things worse. I am so scared that my eyesight will eventually go completely. Do you know of any counselling service that I could contact? Someone to talk with might help?
This all sounds really familiar!!! I told my optician that having had no prescription changes for years all of a sudden the vision in my left eye was poor. They said my vision was absolutely fine. It was only when I got a central flashing in one eye that they began to take me seriously and by then the damage was permanent. I too worried about losing my sight but this hasn't happened. I've got peripheral vision and a tiny spot in the middle that's clear but in the middle is a ring of 'missing' vision which I can't see through. If, for example, I were to put two items together on the kitchen worktop I'd only be able to see one of them at a time - does that sound familiar to you? Both eyes together give me sufficient vision to be able to carry on a normal life - driving, working etc. I do need additional lighting when I read, at work etc. but I've had lights fitted where I can and use a little reading torch that attaches to my books.
My sight stabilised after a few months of stopping the drug but it now goes through spells of deterioration which it's doing at the moment. I don't know how it will progress this time but despite this I still have sufficient vision to work with.
I know exactly how you feel - some people would think I was being silly but I used to cry and worry that I was going to go blind. I didn't have counselling but I was pointed in the direction of the RNIB and there are other organisations for people with sight issues who do offer this sort of thing.
Please keep in touch - it's comforting to hear from people who are in the same situation as me.
Dear Hetty56. Thank you for your response, I too have sufficient sight at the moment to carry on my daily life. However, everything just looks fuzzy all the time. I worry that if things get worse how long will I be able to carry on with work etc. Thank you for your suggestions on lighting I will try this when reading or working
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