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Thread: eyes involvement ?

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    Default eyes involvement ?

    to those who have eyes involvement, I wanted to ask about the manifestations of it, and what to check about it.

    for long time, the white of my eyes is with Capillaries, it looks like my eyes are tending to be red. My eyes doc checked me Thoroughly, with extending pupils, and everything. he founded nothing. because he never met any weggie, he opened the internet and checked every kind of inflamtion that was connected to WG. he said I dont have them.
    but still my eyes tend to be red. sometimes Im feeling in my eyes same feeling as when having fever, when I dont.
    It is scary.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    I had scleritis which is common with GPA. It was easy to recognize and treat. Some here have lost vision due to damage to eyes from GPA but I would hope that a good eye exam could detect whatever damage is going on to cause it, but maybe some one unfamiliar with GPA might miss it. I would ask the eye doctor to consult with a GPA expert in eye issues. I think the Vasculitis Foundation could help find one as they could do the consult remotely by phone or internet or fax.

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    Dear Alysia:

    Hi.

    One thing that I learned from WG is that we should be very sensitive to any change that may seem abnormal in our body because relapse happens unexpectedly and quickly.

    I think that you should consult with your rheumatologist immediately. I remember once I had a sudden relapse with eyes involvement and at the beginning blood test, eye doctor visits and even MRI could not show the inflammation, but my eyes were red and I had a kind of abnormal feeling in my eyesight.(after sometimes,about a week or two, there came blurred and double vision also eyeball displacement along with sinuses, nose, ears and joints involvement).None of the doctors took my complaints seriously at the beginning but after the serious symptoms showed up, they realized that my feelings were right, but I had to take Cyclophosphamide and.....

    Hope that it does not relate to relapse and goes away quickly.

    Wish you health and happiness.

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    I too had eye involvement with my last relapse. Scleritis was the diagnosis. at the time it did not affect my vision, but have had to start wearing glasses since. My s doctors tell me it had nothing to do with WG (the vision change that is) but it sure was a coincidence. Anyway, my eye Dr said that the treatment was cytoxan anyway. i already having treatments so lt cleared up in about a month.

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    Yes, eyes for me too........my vampire eyes, I call them.

    My GP said Uveitis but the rhuemy said scleritis.
    It cleared up with steroid eye drops and now occurs ocassionally but clears up again by the next day.

    Alysia, you definately need to see an eye specialist familiar with Autoimmune diseases.
    Also, my GP recommended to take a photo of them, when they are at their worst
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Hi,
    thanks for the replies.
    I didnt find such an eye doc here.
    my WG doc told me what to ask him to check.
    what are the other symptoms to look for ?
    and I hope the RTX is starting to work, so it will help my eyes too....
    for few days i have less "stuff" from my nose
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    I had eye redness early on with WG. I could clear it up with Bausch and Lomb eye allergy drops, available OTC, not steroidal, I don't think. But I'd wake up with it every morning. My whole eye area was swollen and irritated during that time. Once I got on treatment with CTX and pred, it cleared up little by little. There was never a diagnosis, nor did I go to an eye doctor, and I think for most of you, it should be more thoroughly investigated than mine was. But just saying that it did clear up along with my other symptoms that improved with treatment.
    Anne, dx'ed April 2011

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    Speaking of eyes I got another shot of Avistin in my right eye. The doc says the Non-Ischemic Central Retinal Vein Occlusion is starting to come back.
    Phil Berggren, dx 2003

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    Quote Originally Posted by pberggren1 View Post
    Speaking of eyes I got another shot of Avistin in my right eye. The doc says the Non-Ischemic Central Retinal Vein Occlusion is starting to come back.

    Ouch

    I still don't know how you can take that one
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    I'm Batman......did you forget?
    Phil Berggren, dx 2003

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