has anyone got Lupus in their eyes?

[drobbie]

I have been told I have Lupus in my eyes. Does anyone else have this? Thank you

[Lizard28]

sorry didn’t know you could have this, I have a lot of problems with my eyes, can you tell me your symptoms please?

[drobbie in reply to Lizard28]

my eyes are very sore and dry and l still can’t sleep for them. Specsavers said the backs of my eyes were ok but very dry. Also flashing lights.

[Lizard28 in reply to drobbie]

Thanks for replying, I have very dry eyes, I have to prise them open in the morning. I do have an ophthalmologist but they have never mentioned lupus in my eyes, I was just interested in the symptoms.

[StriatedCaracara]

I have different eye issues, including dry eyes

healthunlocked.com/lupusuk/...

Also had uveitis

But also one eye photophobic at the moment, and get migraines linked to being in strong light. Lesion on retina, cause not known.

What are your symptoms?

[U400TAR in reply to StriatedCaracara]

Hi,

Sorry to hear you are struggling with your eyes. I have Lupus and eye issues very similar to what you describe and have been told I have Sjogren’s in my eyes. Not meaning to concern you as I’m sure yours is Lupus. I hope you get the support you need

[StriatedCaracara in reply to U400TAR]

Covid infection March 2020, seemed to progress symptoms.I think my sicca symptoms may be due to autonomic dysfunction. At night get dry mouth, and dry eyes worse then. I find it confusing, and my ENA screen did not report on one of the antibodies get in Sjogrens.

Only then was eye lesion found by Specsavers

Now at occular oncology clinic three years and no definitive diagnosis.

I reading articles on how both covid and autoimmune conditions like SLE can mimic lesions that are put down to other causes. I have had lots of different scans..and no answer..symptoms flare like and respond when have steroid for other ressons

sciencedirect.com/science/a....

[drobbie in reply to StriatedCaracara]

cannot really stand the sunlight, two pairs of dark glasses on!!

[U400TAR]

Hi,

Sorry to hear you are struggling with your eyes. I have Lupus and eye issues very similar to what you describe and have been told I have Sjogren’s in my eyes. Not meaning to concern you as I’m sure yours is Lupus. I hope you get the support you need

[Riselikeaphoenix_123]

Hiya, I have dry eyes and have regular appointments to Opthalmology because I have damage to both of my corneas. I also get pain in my eyes to light and sun and throbbing pain behind my eye like it's been squeezed. My eyes also squeak when I rub them. Do you get these symptoms? Sending hugs to you Lupies as it does suck! 💜💜💜Cx

[drobbie in reply to Riselikeaphoenix_123]

I also can’t bear the sunlight, don’t get squeaky eyes but very sore. Trouble sleeping. Hugs to you all and many thanks.

[jackaboo]

Yes, about 12 years ago Lupus started attacking my eyes! It`s caused retinal vasculitis in the end. It was pretty serious for a time. I still have my eyes checked very regularly as it caused some damage! I also suffer from extremely dry eyes, uveitis, iritis and some loss of peripheral vision. It was found by Spec Savers! who were great, Nothing was caused by Hydroxy as most people think, as it`s actually quite rare probs caused by it! So I was put on a cocktail of high dose meds and they saved my sight. Hope your`re ok XX

[drobbie in reply to jackaboo]

Specsavers were good to me also, back of my eyes are ok. Will continue with the Hydroxy. Many thanks

[milkwoman]

Have you’ve been tested for Sjogrens? It’s a different auto antibody from Lupus. I have Lupus and Sjogrens (both diagnosed in 2014). My symptoms are dry eyes and dry mouth.

My eyes can get very irritated/dry and I use preservative free OTC eye drops. (iVIZIA drops are fantastic as are Systane Hydration PF). I also take (1) 1000 mg flaxseed oil capsule daily. My doc prescribed civimeline for dry mouth, which I take before bed. I also take Plaquenil for both Lupus/Sjogrens as it keeps the inflammation down.

From what I read, when lupus attacks the eyes, the symptoms are usually far worse (retinal vasculitis, scleritis, uveitis, nerve damage, vision loss, eye stroke, etc).

[drobbie in reply to milkwoman]

Hi , are you in the UK , do you buy your eye drops or are they prescription. I was diagnosed with Sjogrens some years ago and still have flashing lights in my right eye, also a white circle and a dark cloud, could be posterior vitreous attachment.

[milkwoman in reply to drobbie]

I’m in the USA. I’ve used all kinds of drops (prescription and OTC). I’m currently only using the OTC drops that I mentioned above and I buy off Amazon.

Since you have been diagnosed with Sjogrens it makes sense to me that is what is affecting your eyes. What meds are you on to treat it? Do you regularly see an Ophthalmologist? I see mine every six months to check eye health and to make sure I’m not having any toxicity issues with the Plaquenil.

[StriatedCaracara]

Found this headaches.org article that mentions light triggering headaches, it mentions types of specs to wear:

headaches.org/light-headach....

[KnitSewPurl]

Have they treated you with eye drops and cream with heat pad? Did you see a Cornea specialist to get a diagnosis of your eyes? Did they do specific test to get the diagnosis? And a biopsy to confirm that it is Lupus in your eyes? If it is Sjögren's Syndrome they still can do the test to confirm if it is. When it is effecting your cornea you need to see a Cornea specialist ASAP to make sure your cornea continues to remain healthy especially the lining.

Your eye drops once you have seen a specialist they will prescribed you a right drops and treatment for your eyes. Just try and see some one ASAP. Whether it is private or NHS.

As for me I was diagnosed with Sjorgren with my eyes, both my eyes are extremely dry, I use eye drops (hyloforte) , and night cream - Xailin plus eye heat pad. I am also dry in my ears,, mouth, nose , skin , generally dry everywhere..I keep my skin moist by using moisturiser it seem to maintain the skin and keeps it from drying out. Don't get my knuckles cracking and bleeding. As my eyes are not what they consider severe enough to commence on steroids , they are still monitoring me at the hospital.

Hope you will find this of some help.x