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Thread: eyes involvement ?

  1. #21
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    My husband has eye involvement. The WG is affecting his optic nerve, inflammation of the surrounding optic nerve sheath in the brain. His eyes do not look red, cannot see anything happening to the eyeball itself. Has anyone else ever had these symptoms? Vision loss, double vision? He has had two RTX infusions with no effect yet. Infusions about two weeks ago.

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    My daughter first and only symptom so far has been to the eyes. She had red eyes diagnosed as episcleritis would not get better with eye drops after six months and four eye doctors to figure out why it wasn't going away finally an auto immune eye specialist did a biopsy and was diagnosed. Since she has been on MTX she is on medicated remission and hoping to get off them meds one day.

  3. #23
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    Quote Originally Posted by maria garcia View Post
    My daughter first and only symptom so far has been to the eyes. She had red eyes diagnosed as episcleritis would not get better with eye drops after six months and four eye doctors to figure out why it wasn't going away finally an auto immune eye specialist did a biopsy and was diagnosed. Since she has been on MTX she is on medicated remission and hoping to get off them meds one day.
    Lovely to see you back

    I'm glad your daughter is doing so well and I hope that she can/will be, med free, very soon.
    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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    Glad to hear she is getting better!! Can I ask what tissue they biopsied?? Did they do any other tx besides MTX?

  5. #25
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    Quote Originally Posted by Kodiak View Post
    Glad to hear she is getting better!! Can I ask what tissue they biopsied?? Did they do any other tx besides MTX?
    Biopsy of eyelid. There was some scar tissue and no other doctor had found. She started with MTX and prednisone after a year they tapered her of the prednisone. Now she is on 25mg Mtx And folic acid. They tried to taper the mtx but her eyes turned red again. So she went back on it. She was disappointed. She keeps asking how much longer until she gets completely off it. It's hard not having an answer.

  6. #26
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    That's amazing about the eyelid.
    Phil Berggren, dx 2003

  7. #27
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    Well, Maria, it's nice she's off the pred, anyway! I usually hear of it the other way around, people go off the main immunosuppressant and stay on the pred. I don't know which would be better, or worse, if you have to stay on one of them. With her good track record, I should think she could get off the MTX before too long.... but I'm sorry she still has to put up with it for an unknown length of time.
    Anne, dx'ed April 2011

  8. #28
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    Hi,
    Im searching for the right doc but I dont know who is the one.
    I mailed some and asked about experience with WG.
    none said they have, but they dont say they have not. I belive they dont, and not telling. they are all very glad to invite me to come (rare patient, hmmm).
    one wrote to me that he is specialist in "eye sockets" (I hope i translate it corectlly) and asked me to bring with me CT of eye sockets. is it really the direction ?
    other said that she is specialist in uveitis, is it relevant ?
    or should I be less shy and ask them again, how much experiece they have with WG ?
    well, at least I CAN TRUST YOU HERE !
    THANKS !
    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.

  9. #29
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    Uveitis is relevant...frequently goes with WG. That's how an acquaintance was dx for WG. The rest of them, I would be suspect of their abilities if they don't say yes to WG. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  10. #30
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    I chose my opthamologist on the basis she specialized in Uveitis. I don't have eye involvement yet, but I thought it would be safer to have one if I need it! Good luck!
    Mary
    dx'd Janaury 2013
    involvement: lungs, kidney and sinus

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