Ped in right eye: I got the results from my recent... - LUPUS UK

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Ped in right eye

pattypatchwork profile image
12 Replies

I got the results from my recent eye check at the hospital and, although there are no sign of hydroxychloroquine toxicity, I have signs of PED in my right eye.I gave googled this and apparently it can be caused by antibodies attacking your eyes and can be a precursor of macular degeneration. Can anyone tell me if they have had similar results?

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pattypatchwork
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12 Replies
StriatedCaracara profile image
StriatedCaracara

I have had a few issues with my eyes which I have not had full explanation of, just lots of tests.

I believe auto-immune antibodies can attack any structure in the eye. My eye symptoms all improved on hydroxychloroquine :

This page I find helpful:

lupusuk.org.uk/medical/lupu...

Steroids I have found to have both good and bad effects on my eyes

Izzy123gym profile image
Izzy123gym in reply to StriatedCaracara

I had a huge allergic reaction to Hydroxychloroquine . I was covered in a rash and felt very ill; the drug was stopped after 8 weeks. I have subsequently developed wet macular degeneration in one eye; I have no idea if there is a connection though.

StriatedCaracara profile image
StriatedCaracara in reply to Izzy123gym

I had a rash 30 days in on Hydroxycholoroquine but on rechallenge was fine. My post from then is below. I did not have symptoms of being more unwell though

healthunlocked.com/lupusuk/...

pattypatchwork profile image
pattypatchwork in reply to Izzy123gym

Hi, Thank you for answering. Is the wet version treatable?

pattypatchwork profile image
pattypatchwork in reply to pattypatchwork

sorry - i seemed to have answered the wrong post. Ive been on Hydroxy for 4 years with no major side effects.

Izzy123gym profile image
Izzy123gym in reply to pattypatchwork

Yes, eye injections every 10 weeks currently to stabilise the condition. I don't ' enjoy' those days but it's a small price to pay to achieve stability. Currently, there is no treatment for dry macular degeneration.

pattypatchwork profile image
pattypatchwork in reply to Izzy123gym

Thank you. It's the not knowing that's the worst. I go back for another eye scan within 2 months but in the meantime I am picturing myself going blind

Izzy123gym profile image
Izzy123gym in reply to pattypatchwork

I totally understand your anxiety; I was exactly the same. I must add that there has been no deterioration in my sight since the injections began. I've met lots of patients in the Eye Hospital who are totally stable like me. I know that the injections are for life or until they find a cure ; I'm hoping for a cure as there's a huge amount of research going on. Good luck and best wishes.

pattypatchwork profile image
pattypatchwork in reply to Izzy123gym

Hi, Thank you for answering. Is the wet version treatable?

michaellasmith profile image
michaellasmithAdministrator

Hi pattypatchwork,

Sorry you are currently suffering with your eyes, however good to know it is not toxicity from medication, that might be tricky to navigate!

Keep us updated with your next appointment, good luck!

Warm regards,

Michaella

marypw profile image
marypw

Hello, do you know that there is a Macular Society group on Health Unlocked? It is a small group but very supportive. I needed surgery for a macular hole last year. The Macular Society itself has a very informative website as well.

pattypatchwork profile image
pattypatchwork in reply to marypw

Hi, no I didn't, thank you for telling me about them. I'll wait until I get a definite diagnosis and then get in touch with them x

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