Hydroxichloroquin & Toxic Retinitis : Hi As most of... - LUPUS UK


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Hydroxichloroquin & Toxic Retinitis

Cal66 profile image


As most of you know that the Opthamologist at the Eye Infirmary told me that I have toxic Retinitis. I unexpectantly had to attend another visual fields test today and I feel more positive that the results will be better today & so did the nurse. I'm sure that the Consultant had been unnecessarily panicking & things aren't as bad as he said, especially as I had just had anesthetic eye drops Put in my eyes 1 hour before seeing him, so again I'm waiting for results before I know what to tell the Dvla, its driving me nuts with all this going on.

10 Replies

🤩 THANKS: you’ve been on my mind! 👍🤞🍀❤️

Cal66 profile image
Cal66 in reply to Barnclown

Thank you, it has helped me been able talk about it on here, rather than keep talking to my mum & sister, as I know that they are worried but not wanting to tell me and I don't really think that my mum wants to believe it either.

I’m glad you posted,was thinking of you, am glad things are seeming a bit better for you today.

I find it easier to post on here sometimes.

My husband is really good,but sometimes he gets upset if I want to discuss. My conditions in depth

I have 2 sisters and a brother,but can’t say much to them,my 93 year old mum is unwell,she keeps having TIAs DNRin place, her condition varies from hour to hour,so I can’t say to much to them.

Cal66 profile image
Cal66 in reply to Oshgosh

So sorry to read about your mum's illness. You will likely be feeling much worse at the moment because of worry over your mum. It's a good job that you have sisters to take some of the pressure of you.

I am very close to my sister, but she has Fibro, arthritis plus other things, she gets a annoyed with me being looked after by the doctors because she keeps getting discharged & ignored and so I try not to say too much to her as she gets depressed and upset.

My mum has fought doctors & looked after me all my life, but she is getting older & not in great health herself. I don't really tell her how I feel about everything as she is always worried of how we will cope when she isn't here. This is why this site is so good because we all have similar problems and can discuss them openly. Try to rest in between the time you spend being with your mum, as you don't want to make yourself ill as well, so take it easy.

Oshgosh profile image
Oshgosh in reply to Cal66

thank you for your kind words.

It’s been a really difficult year.

I was in hospital last November,got diagnosis of NSIP lung disease.

My mum was first admitted to hospital in December,was in elderly rehab over Christmas.

Further on ,I’ve been given a diagnosis of lupus,have been on immunosuppressants ,had to come off them due to raised. Liver bloods.waiting to go on different meds

Can do very little for my mum,I feel guilty,but have to be realistic.

My husband looks. After me.,my youngest sister looks after my mum,.my brother and sister both have to work.

I haven’t told my mum how ill I am,we put it all down to asthma,but I think she has an inkling.thanks for listening

Cal66 profile image
Cal66 in reply to Oshgosh

Your welcome, I thought that I was badly off. Try to relax & take it easy, they will find some medications to help you eventually, at least you know where we all are if you need to talk or let off steam.

In the USA they blow by anything to do with sight when they give you HCQ. One said off-handedly to make sure I get my eyes checked. I thank you and others for sharing so I knew how to take care of myself and what to look for. I pray all goes well with you.


Hi. I’m in US also. (NY State.) My Doctor was a little blasé about it too but he did refer me and the eye doctor said it’s rare to develop problems on such low doses. (I take 200mg 2x day) Must be when it’s used for something like Malaria, the dosage is much higher.

I’ve been on it for around four years and within the last two years I’ve been seeing huge halos around any lights in the nighttime and any reflective item like street signs etc. and it impairs my ability to drive at night which wasn’t good to begin with. Now I can only drive at night if it’s a clear night and only in areas I know the roads pretty well.

Doctor thinks it’s from my severely dry eyes. He said my corneas look like the moon with all the craters.

Then a few months ago I started seeing flashes in my left eye, like out of my side vision it seemed and noticeably worse floaters. The flashing either improved or I’m just not noticing it so much. So they had me come right in and they did not see any abnormal tearing. I have some vitreous ? pulling away but they think it’s more age related then from the Plaquenil.

However, I did not have issues up til this point so who knows. I am almost 58 so could be age related. I still feel like I’m in my 40s so when the doctors tell me something’s age-related, I look at them like they’re nuts. Then I remember oh yeah, I am getting up there. Who’s the nut here now?! LoL.

I feel the same way about age. I’m 55 and some lady asked me if I needed help at my car a few days ago. Now I know I look sick.

I think you’re right about the amount. My docs are very blasé as well.

My vision is just dull. I can’t explain it better. It’s become like the nothing is a bright as it was yet too bright light-wise. My ability to see was already bad. I switched from contacts (35 years) to glasses all the time. Dry eyes. It’s just for the first time it’s not subtle.

I’m in Virginia.


Oh that does sound more positive. I am so pleased for you

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