Lupus Choroidopathy

[iris7]

Hello,
I recently flew to Boston to see Dr Foster for recurrent relapsing bilateral iritis. He gave me a diagnosis of lupus choroidopathy, and believes I have lupus . I am now taking cellcept to manage the eye condition, prescribed by a non eye dr in my country. Dr Foster will see me again in a few months and said that there is no one anywhere near me to manage my case and so to come back. Which leaves me without a lot of access to information about my condition or what to watch for in terms of it worsening or signs that are of concern.
In short, I cannot find a lot of information on lupus choroidopathy. There is an article on uveitis.org, I do not have the retinal involvement described there.
Sometimes, even when the iritis is quiet, my eyes hurt so much, like spikes are in them. I have no idea of if this is typical.
I was wondering if anyone else has this condition and could share their experience with me.

Thanks so much,
Iris

[Mike Bartolatz]

Welcome to the group!

are you taking a dilating drop while your eyes are inflamed? with iritis often a dilating drop is prescribed to relax the ciliary body. this stops some of the pain. optic neuritis can cause pain. my vitreous is trying to detach in both eyes and I get this type of pain from this occurring. but it is a quick stabbing pain that goes away. watch for large black floaters which would indicate bleeding. also would require immediate visit to the ER/retina specialist so that the bleeding can be stopped.

I'll see what I can find for you on lupus Choroidopathy.

wish you the very best,
Mike

[iris7]

Thanks for your reply Mike.
I take cyclogel for the spasming which does help some. Last night even though the iritis is quiet (no white cells to be seen in my anterior chamber) and I had the cyclogel in the pain in my R eye was pretty bad. I finally took some tylenol 3. I will look into optic neuritis.
I appreciate you giving me information on these warning signs too.

Thanks for your help
Iris

[Mike Bartolatz]

hope the pain subsides some for you. from time I used cold washcloths and even ice packs to try to alleviate eye pain. just don't use an ice pack for more than 10 minutes with about 20 minutes between ice pack use.

take care,
mike

[iris7]

Will do.
Thanks,
Iris