Hydroxychloroquine and Eyes: Hello everyone, I just... - LUPUS UK

LUPUS UK

31,744 members28,102 posts

Hydroxychloroquine and Eyes

Whitemagnum profile image
5 Replies

Hello everyone, I just wondered if any of you who have been for an eye appointment at a Retinopathy Clinic have been told that you have "drusenoid deposits (consistent with SLE)"? Nobody explained what it actually meant as I just received the clinic letter through the post. (On the plus side, it also said that there were no signs of Hydroxychloroquine toxicity). I have been on 200mg+now 400mg for about 20 years. Thank you!

Written by
Whitemagnum profile image
Whitemagnum
To view profiles and participate in discussions please or .
Read more about...
5 Replies
tillie profile image
tillie

Sorry keep deleting trying to word it betterI have been to clinic, my results the same as yours only I learnt mine through Specsavers. Still waiting to hear from clinic.

Do you expect to hear about a further appointment?

Whitemagnum profile image
Whitemagnum in reply to tillie

Hi tillie, that's ok,no problem! The clinic letter just said I'll get another follow-up appointment next year so obviously it's not something that needs immediate attention, more that they just need to keep an eye on it,(haha!). Also, they specifically wrote "consistent with SLE" so it's something they are aware of in lupus and presumably nothing to be alarmed about! I don't suppose Specsavers told you anything else more specific? Do you know if it was through the OCT scan they discovered it? (I actually had my eyes tested+scanned etc at Specsavers too just a month ago+they didn't say anything about it,they said everything was fine! Very strange! When I pick up my new specs I'm going to ask to speak to the Optician about my results). Don't let it worry you. Now they have identified it, they can monitor it regularly and we don't need to worry!

tillie profile image
tillie in reply to Whitemagnum

I did have the OCT scan and probably I drew more attention to worrying. My AMD is in very early stage & I don't reckon they would have had any reason to worry me at such an early stage..Big mouth here brought it up.😁Heck hope I haven't opened a can of worms!!

KnitSewPurl profile image
KnitSewPurl

Hi, Been on Hydroxychloroquine since 2009 . Specsavers discovered spots in one eye in about 3-4 years ago.I requested to be referred to the hospital so the put out the letter to the GP and GP to the hospital, I was referred to the hospital to see if it was hydroxychloroquine toxicity as I also have strong genetic in my family for Stargards as well ,I was referred to Oxford for investigation 1. to confirm for toxicity 2. for genetics side.

out come of this was not toxicity found in both eyes and the spot I got is consistent with Stargards . I am being monitored yearly. I would suggest try taking Lutien capsules it has been known to slowed down the deterioration of the eyes in fact.

Whitemagnum profile image
Whitemagnum in reply to KnitSewPurl

Thank you KnitSewPurl! I'll look up Lutien capsules but I don't really want to take any more pills as I take over 15 different types of meds every day anyway+don't want to add to it!! Thanks anyway!

You may also like...

Hydroxychloroquine and eye testing

local hospital for their eye tests on Hydroxy? My rheumy has told me to have my eyes tested at the...

Hydroxychloroquine and Eye test advice

Hi, I am new on here and have been familiarizing myself with the site. I have found lots of posts...

Plaquenil/Hydroxychloroquine - which eye tests do you need and when?

I'm aware that I need regular eye tests on hydroxychloroquine and my consultant did briefly mention...

NO Hydroxychloroquine

Hello. I had trouble getting all my hydroxy prescription last month and now I’ve been told there is...

Hydroxychloroquine 🦠

I’ve been taking hydroxychloroquine for 20 years , was the drug that literally safe my life all...