Eye problems

[Raven_claw]

Another question sorry!

So far I’ve been diagnosed with connective tissue disease/cutaneous lupus but am awaiting several appointments at different departments. All very new to this. I am seriously worried though about my eyes.

I have black waves under my eye vision which has been happening for a couple of years. I previously had tests at eye hospital and neuro and was told even though this was not typical I was diagnosed with chronic migraine.

I am planning on bringing this up at my next appointment but I can’t help thinking this might now all be linked. Does anyone else have this eye issue?

[Hidden]

Hi RC, no I don’t think I have that exact problem, but definitely vision problems. The sun sensitivity is crazy. I love light and lots of windows in my home, but, when the sun shoots directly through them, it’s a killer. I have to move the blinds to divert it’s rays. At other times, things will suddenly dim on me without reason, and I feel like I’m going blind, and then things will magically come back to normal. 🤷🏻‍♀️IDK if this is related, or not related. But if I were you I would definitely bring this up to your doctor. I wish you all the best, and I hope it’s just a temporary bother and goes away as suddenly as it appeared.

[Raven_claw in reply to Hidden]

Thanks I will add it to my list. As a migraine sufferer I think drs put anything weird down to that.

[Aria_1008]

Hi RC, I have been diagnosed with the same. May I ask about your treatment plan? Thanks.

[Raven_claw in reply to Aria_1008]

Hi Aria

I don’t have a treatment plan yet. I’ve had lots of issues over the years but they have always been thought of as just a bit of Reynolds or rosacea. But 2 summers ago I had a really weird bad patch of skin on my chest. Dr gave me some cream and sent me on my way and by winter it was gone. Same happened again this year but this time I took loads of photos. When I finally got to see a dermatologist in a primary care setting in December it was nearly clear again but she took a biopsy and confirmed diagnosis and gave me a couple of different creams (soolantra for face) and Audavate to use but for 2 weeks only on chest. I have seen improvements in both but again it’s winter! I am now waiting until June for secondary care appointment with dermatologist. In meantime she also said I need to see a Rhumatologist which is happening in March. I am very much in limbo. Do you have a plan yet? How long have you been diagnosed? It’s such a long confusing process!

[Aria_1008 in reply to Raven_claw]

Thanks RC. No plan. I have drifted from methotrexate to azathioprine back to methotrexate and now mycophenolate. I was diagnosed theee years ago but have had symptoms for seven years. I have been on prednisolone for three years too and they have kept the rashes under control unless I have flare then I get them on my body and the Malar radh on my face. Not been given any creams though. My eye symptoms have been ignored. They are blurry, painful and hurt with the light 😕

[Raven_claw in reply to Aria_1008]

Good to hear there is medication to keep the rashes under control. I hopefully will know more over the few months. Hope you see some improvement in your eyes soon.