Hydroxychloroquine toxic retinopathy

[Juniperm]

Hi. I have had Lupus for 22 years and been on Hydroxychloroquine 400mg daily since then plus 2mg Prednisolone. Recent eye tests have shown that the Hydroxy is affecting the retina. I was warned at the outset, that it can affect eyes, but it still a bit of a shock. Opthamology Consultant says I must stop taking the medication. Obviously eyes are important so i am almost off the Hydroxychloroquine. Have not had any further Lupus Blood tests yet. Rheumatologist in August said i should be ok as Lupus blood tests were stable and im still on Prednisolone. Has anyone else experienced this? If so, how has it affected your Lupus? I feel I was stable as I was on the medication, otherwise I wouldnt have been on it for 20 years! Not seeing Rheumatogist for 5 months so any advice would be appreciated.Many thanks.

[StriatedCaracara]

In my copy of Dr Donald Thomas' Lupus Encyclopedia 1st Ed. p518 It says the antimalarial Quinacrine (Mepacrine) does not affect the retina so can be used in people with eye problems that prevent them being on Hydroxychloroquine.

I think it is more often prescribed by dermatologists but my rheumatologist prescribes it.

Maybe a fallback option for you.

[Juniperm in reply to StriatedCaracara]

Thank you very much. I will look into it.

[Betty909090]

Hi,

Sorry to hear about you being diagnosed with HYDROXYCHLOROQUINE induced retinopathy. 😢😱

This topic has been discussed many times.

Here’s a post with some15 responses.

They may be helpful to you:

healthunlocked.com/lupusuk/...

An important recent paper (2024) on HCQ and Chloroquine eye toxicity:

ncbi.nlm.nih.gov/books/NBK5...

“…Chloroquine and hydroxychloroquine bind to melanin in the retinal pigment epithelium (RPE) and cause damage to the macular cones outside of the fovea. ..”😢

BW

[Juniperm in reply to Betty909090]

Hi. Thank you so much. Scary reading. Living alone , i need my sight, so think i will come off it completely. Have eye consultation next month, so hopefully i will be better informed. Fingers crossed Lupus symptoms wont be affected in the short term. Rheumatologist never offered an alternative when the eye scans started showing problems. My vision feels no different ,so lets hope it doesnt get worse. My only hobby is painting and i need my eyes!! My mother has age related macular degeneration and i see how this has impacted on her life. Thanks for replying .😀

[SjogiBear]

Sorry to hear that you are now getting the eye problems that can be associated with hydroxychloroquine. I had to come off it around two years ago after the optician found problems at my annual eye test - I'd been on it for around 9 years at that point. The risk rises significantly over time which I don't think the rheumatologists actually get across to us when they put us on the drug. The suggestion is that the risk is only around 1% and you can stay on it indefinitely. In fact the low risk is only for up to five years but most of us start it thinking we will be on it for far longer than that!

The main problem I had stopping the hydroxychloroquine was that my IBS went absolutely haywire - it turns out that the drug affects the gut microbiome and by stopping it, my gut went completely out of balance and the bad bacteria basically took over. I was taking pro and prebiotics and eating yoghurt, kefir and sauerkraut and when my gut was tested it came back 0 for lactobacillus! It took me a long time to get back to some normality.

I have a lot of upper digestive problems anyway which are still an issue and my skin has flared up basdly with psoriasis. My rheumatologist has prescribed colchicine but I'm too scared to try it and just manage using OTC painkillers, particularly aspirin which I'm lucky that works for me but clearly cannot be used often with gut issues.

I suggest you ring your rheumatologist's secretary as you need some kind of answers before your regular appointment is due. They should get back to you about this as clearly it's not exactly your choice to stop taking the medication they have continued to prescribe.

Good luck!

[Juniperm in reply to SjogiBear]

Thank you for your advice.