Had an appointment with Opthamologist at hospital last week, received follow up letter yesterday & the news wasn't what I had wanted to read. I was told that my eyes had slightly worsened but apparantly I now have Maculopathy in both eyes, my retinas are thining, so much for only slightly deteration.
When I 1st went on them I was told that there was 1 in a million chance that I could get Cataracts & have eye tests every 2 years, so much for that.
Hi cal66. I got a similar letter in February from St Thomas’ hospital - mild thinning. I have been on Hydroxy for 14 years so far. Got another appointment for March (at St Thomas’ hospital) and am awaiting the results. At least feel reassured that they are very much aware and on it. When I had my test last summer at the opticians they said all is fine. No thinning.
Are u still on the hydoxychloroquine?? I was taken straight off of it as soon as any possibility of damage was thought of. I'm way overdue a follow up it was due before the beginning of covid and I have just yesterday had my appointment postponed for another month so am not happy at all am ringing them today!
Yes. I am still taking Hydroxy. Will see what next letter says.
Hm, i would contact your doctor to confirm if you need to stop w hydroxy
Hi
I agree, within an hour of a fields test at Eye Infirmary my rheumatologist rang to tell me to immediately stop Hydroxichloroquin. If there's a chance of you having eye problems then get straight in touch with rheumatology & tell them that you are aware that you have problems with your eyes & should you still be taking Hydroxichloroquin
Yes me too, Covid had me rescheduling my appointment, now I'm just scared to get checked out for I know somehow it won't be good news😔😔😔😔 my sight haven't been all that good lately, blurriness, can't see anything without glasses, the last time I saw a eye dr which was over a yr ago, after he said to me " all is well, since u can't see whilst reading, just get some reading glasses at walgreens" I'm like huh? He said yes there are different strength, h said at the time it was 1.75 so I got them and I was like WTF😱😱 and since after that I've been purchasing the same until I do get to see him and get proper glasses 🙂
My worry is that I am unable to leave the house without my car as I can't walk far & need to use my wheelchair, mum can't drive & my sister always has to be on tap for her little boy & isn't in great health herself and so my mum and I will be stuck at home apart from me getting taxis to hospital appointments
Hi I’ve been told that I have cataracts on both of my eyes and my eye sight is really bad because When I watch the television my eye sight goes blurry I spoke to my rheumatologist yesterday and I told him about my eyes but he never said Anything about stopping the hydroxichloroquin but reading all this maybe I should phone my doctor I’ve got opticians on Monday so I will see how much my eyes are deteriorating I just hope that they are not really bad
HiHas your optition not referred you to hospital to see an Opthamologist about your Cataracts? You can have surgery to remove them, mum had hers done successfuĺly. Also have you been on Hydroxychl very long for that to be the reason for the Cataracts, I was on/off for almost 20 years?
It was actually a locum optician that picked mine up and referred me to ophthalmology who stopped it asap I was on it for 10 yrs.I have horrendous problems with fatigue but theres no way I can go back on it now I think even tho its been stop there still potential for me to go blind?? So I'm really concerned about the vision in my left eye its blurred from the I side from my nose going outwards and getting worse. My 3 month f/u is 16 months overdue and now postponed again so God help them if they find its worse is all I can say!!
I have had cataracts fixed in both eyes. This is a very straightforward operation - I really hope that is reassuring to you. It will fix your eye problems pretty much instantly - and though you have to be careful for a while afterwards recovery is not prolonged. See your GP and ask to be referred to an eye surgeon. They won't do cataracts until they reach a certain stage - but once they are done it is like a new lease of life.
Do you (or have you ever) taken long term prednisolone? I took it for 6 years at various doses - not high, in the scale of things - and the surgeon who did my cataracts was very clear that they were caused by the steroid and not anything else.
HiI was on Prednisone for about 25 years, but I was never told that they can cause Cataracts, the 1st I knew was reading it on hear & so I was quite shocked to find out about it
If it had been Cataracts then I would have been able to have an operation, but alas I was not so lucky. All I can find out about my diagnosis is that there is no treatment & that I will lose all central vision and will go blind, I am only 54 years old & not ready to stop driving as we all enjoy shopping in various locations, for the usual thinsg like clothes, I like taking photographs, looking at them, gardening & cross stitch and I won't be able to do any of those things. I'm not saying that Cataracts are nothing as my mum has had both of her eyes done,
I just don't understand why there are not enough prevention for any of all these things. I had thought about if a group of us who are suffering eye problems from Hydroxichloriquine were to sue the Pharmacitical company on the grounds of clearer advice to get an annual eye check at an eye hospital, but it is up to everyone to agree with it, give me your thoughts about it.
Hi Cal66If you see my previous posts, you will see that I have had the same problems as you. However, I think that my eye sight is far worse than yours, the damage to mine can not be fixed and I just pray that it doesn’t get worse. I would definitely suggest that you get advised so that you can stop hydroxy straight away.
Oh I'm sorry love, I too take it and always have me wondering, we do go through lots but we just have to have faith and hang in there, my sight is not all that good but haven't seen my eye dr in a while so I do have an appointment next wk and I'm worried that it won't be good news😔 but the crazy thing is I wear colored contacts, just for a little sexiness 😉 I know it's not good but just to make me feel good I usually add it with my makeup, but next wk will see if my eye is not doin too well or not🤔😔, hang in there love for ur not the only one goin through it🤗🤗🤗🤗💐💐💐💐
HiI was told that it will progress and that there was no treatment available for this condition, but already had some right eye retinal occlusion due an eye stroke when I was 28. But reading what you all are also going through as well I don't feel as alone about it, even though I live with my mum and sister you can't always tell them how you feel all the time.
I was due last year to change my motability car & now I don't really know what I should do, if I have to tell DVLA that would be the end of my driving.
Sorry to ask, but were any of you on Hydroxychlorine long like me and of so were just told it's very rare for it to affect eyes if it did it would likely cause Cataracts?
I am asking this because I am was wondering if we should all try to claim against the pharmacy companies, any thoughts are welcome.
Well. I have just looked at my letter from the Hydroxy retinal screening and it says. Ophthalmic diagnosis : bilateral mild thinning of outer nuclear layer on OCT. No idea what it means.
And then the summary: Both eyes no evidence of Hydroxy toxicity. Follow up in 2-3 months for visual field test HVF 10-2 test. So I am not sure at all what it is about. Anyone can help please?
I didn't understand anything as the Opathamologist didn't explain anything to me. I have only learned more since I got my current letter and using google is how I know as much. It was the same when I had a blood clot in my eye I was just told it was a clot & unlikely to get my sight back, but I surprised them and successfully could see again, even my current Opthamologist doesn't understand it. I now know why, apparently an Ocular clot is an Ocular stroke but wasn't warned about strokes or given treatment.
My current rheumatologist was concerned I was still taking hydroxy when my immune system had been stable for "quite some time" 🥴 She said she was stopping them there and then and wanted me to go for an in depth eye screening in the hospitals Eye clinic.
App came quite quickly and I have to admit I was a bit nervous, a lengthy process I thought would never end but the result well worth it. There was no damage, thank God. If not for her I think I might still be taking the drug.
I have cataracts in both eyes but was reassured it was more to do with aging than the drug, I'm 74 and I knew about the risk of damage from hydroxy but was told it was a rare one.
I completely agree. Whenever Hydroxy was brought up by my rheumatologists I was told it was very very rare (after I asked). However, I knew that one of my friends had lost some vision on it. I only learned very recently on here that sometimes this damage is irreversible and progressive Cal66. This was never mentioned. It is quite shocking that you can be prescribed something without being given the potential downsides.
And whilst this post will obviously bring experiences of it- It does make me wonder how (if it’s so extremely rare) so many people here have found their eyes affected. In a rare condition like lupus (where not everyone’s even on it), you’d think the chances of coming across someone with an extremely rare side effect would be very very unlikely and yet quite a few of you have found your vision affected. It’s worrying that GPs and consultants aren’t always mentioning eye checks. I wonder how rare this actually is or did they first begin prescribing it for lupus about 20-25 years ago and this is how long it takes to build up in your body to cause it?
Have you seen this look what they say of the risk after 20 years?-
rcophth.ac.uk/wp-content/up...
My consultant for 14 years always reminds me to get my eyes checked .Its unfortunate some don't.
Thank God this platform helps us to be aware .
Thx
Got me thinking “rare” which is what I was told, would be from 1 in 1000 to 1 in 10000, but 7 in 100 (which is the risk for Hydroxychloroquine after 5 years) the WHO define as a“common ” side effect & for those on it more than 20 years the risk is 5 in 10 which would be defined as a “very common” side effect. 🤔
Hi pantha50Thank you, for the link that you sent me. It is a lot to read and take in, so iam taking my time reading it. What I don't understand is that the hospital, Macular or the Rnib there is no leaflets to be found, I am having to find out all the information from Google and now with your kind help I now know more about it. The Consultant hasn't explained anything about it to me, except that up to now my central vision seems to be ok and only have a slight deterioration. Also hasn't mentioned about driving since the 1st time I saw him in 2019 & then all he said off handedly was tell Dvla and that was that nothing more If do phone the secretary up to ask about it, then I may be causing more problems for my self and so don't want to jinx it. I keep feeling anxious and sick all the time with worry about it, as my mum and I will have to totally rely on my sister or taxis to go any where, I just wish that I hadn't had such serious side effects of Azathioprine then I wouldn't have taken the stupid tablets.
Yes I’ve learnt a lot very recently myself. It was a lot to take in and I didn’t want to scare everyone taking it, but I thought better to share it. Since my reply I’ve learned that the reason why we weren’t told pre 2017 or that we were told it was v rare- Apparently back then they looked at the newly prescribed & for them it is very rare indeed. They also didn’t have the technology to detect early enough (to make any difference) so in 2008 they decided not to recommend routine screening.
Now they know with prolonged use the risk increases (not so rare) and with improvements in testing it can be picked up. In 2017 they changed this advice and do recommend screening, but I don’t think this advice always filtered through.
Having said that I can see discussions about eye checks on here going back 9 years!
Im so sorry it’s causing you so much distress and that you’ve suffered this rubbish side effect. It sounds from your description that this might be retinopathy. There’s a helpline on that leaflet. Perhaps they could offer you some support and advice about this. I’d feel like suing too, unfortunately I bet this warning is in the precautions sheet in the box.
You’re very welcome. This latest guidance and raised awareness/concern is very new- Dec 2020. Perhaps with COVID and lack of face to face it hasn’t been talked about as much as it might have been. I think it was partly because Mr Trump decided to tell everyone to take it, that alarm bells rang with ophthalmologists and further work was done, new recommendations issued.
I don’t know when they knew the risk was far more common than they told us ( I think that would be your case against) but these medical things are so hard to win. Or if you were prescribed above the maximum recommended for your weight.🤔
Anyway the Macular Society say they aren’t medically trained, but they offer friendly support on that helpline. Might be helpful to talk it through 🙂
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