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Thread: Eye issues

  1. #11
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    My mom has MPA, but in the beginning, she had a gritty feeling in her right eye.
    Her eye felt like she had something in it when the ulcer formed.
    This all happened within a month, so don't let it go.

    She eventually, had to use prednisone for her eye and was diagnosed with Peripheral Ulcerative Keratitis (PUK).
    The pred worked until she had the rituxan which made it flare thru the roof and her opthamalogist gave her cyclosporine (Restatis) with pred drops.
    They use a blue split light to see autoimmune issues going on in the eye, so it is best to see an opthamologist before damage is done.
    Last edited by mrtmeo; 02-27-2015 at 06:32 AM.

  2. #12
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    I'll have to write that down and ask him tomorrow about the blue light "special "
    Life isn't about how you survive the storm, but how to dance in the rain !

  3. #13
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    Vdub,
    OK here's my experience with uvietis. My first episode
    happened right after I was diagnosed with wegs. Really painful, red
    eyes. I spent the weekend sitting still with my eyes pretty much
    shut. It hurt to move my head. I didn't think the emergency room
    would be much help—around here they don't call in an
    ophthalmologist unless you've gone blind. You said you've already
    googled it so I'll just stick to experience. Monday morning I went to
    my ophthalmologist who diagnosed an infection. It took him a few
    weeks to realize something else was going on. Eventually he referred
    me to a doc who specialized in these diseases. That doc is now
    semi-retired & he moved to Fla so I found another not too far
    away. I live in the suburbs of NYC & I have only found those two
    doctors near me. These are very rare diseases & a doc in private
    practice isn't going to make a living just treating iritis, scleritis
    etc. If I didn't have the doc I found now, I would have to go into
    NYC for treatment.

    I have not had an episode as bad as that first one, mainly because
    I now know what to expect & what to do. If I wake up with red
    eyes, I get myself to the doc asap. Uvietis is treated with drops –
    pred forte & Durezol are the most common. I have a prescription for durezol that I
    can fill if my doc isn't in. He tells me it won't hurt to use it for
    a few days even if I haven't seen him. That's the thing though, you
    really can't tell what you have by yourself. Painful red eyes can be
    uvietis, scleritis, episcleritis or maybe something else.

    I will say that I've never had an episode unless I was in the
    middle of a flare or one was on its way. Also, though standard
    treatment is drops, if you have a flare & are treated with oral
    pred you may not need the drops. The oral drugs will get it under
    control. Still, these are dangerous diseases & you need to be
    under the care of an ophthalmologist who is familiar with them.

    I also have dry eyes, I think that's pretty common & not
    related to wegs. I use an over the counter drop under the doctor's
    instruction. Again I don't recommend self treating, see what the doc
    tells you first.

    And finally, uvietis can be mildly active without you having
    symptoms. You need fairly frequent office visits to make sure
    everything is OK.

    I hope this helps, feel free to pm me if I can give you any other
    info

    Be Well!!

  4. #14
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    I constantly feel like there is something in my eyes that is Weg's related because there is constant problems with them. But, I go to the opthamologist and she's like "oh its a little inflamed but you're fine". Wait ... what? When I have my contacts in, they itch and turn red. When my contacts are out, they itch. They burn, they hurt, they throb. Sometimes they are very red when I look in the mirror, not like blood red but just red. Sometimes, I look at something and they are blurry at first and then clear up. It's whenever I move my eyes. It's like they take a second to catch up.
    But, as with everything in my life, the doctors like to tell me I am crazy and send me on my merry little way.
    I do hope that you find some relief soon.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

  5. #15
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    Just wanted to add if you are using steroid eye drops you need to be under a doctor's care and they need to be checking the intraocular pressure of your eye. They can cause increased pressure and glaucoma in some individuals.
    We must let go of the life we have planned so as to accept the one that is waiting for us.
    Joseph Campbell

    When sleeping women wake, mountains move.
    Chinese proverb

  6. #16
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    Quote Originally Posted by vdub View Post
    Totally north.... 64.... :-) I should probably set up another eye appointment if things don't change in the next few weeks.
    You could set an appointment now, because you can always cancel if it goes away, but it can sometimes be hard to get in.
    However, my mom's opthamologist is usually pretty good at getting her in last minute.

  7. #17
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    I still have blurred vision in both eyes and the doctor said its caused by the oral pred. It has improved just a little since they have dropped my pred. dose.

    Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

  8. #18
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    My first visible symptom was scleritis. I've always had eye issues with all this.

    When I have a bad day with all this, they will be blurry and tire easy. They will also ache behind the eye, in the socket. Sometimes if I'm worried there is inflammation, I'll close my eyes and press gently on my closed eye. If there is any pain in the actual eyeball, there's inflammation. (At least for me). Another indicator of inflammation for me is that they will feel like they're not working together. That's really hard to describe.

    I also have severe dry eye. Doc says they see it a lot with auto immune disorders. I use Systane overnight gel as well as Systane Balance and Systane Ultra during the day. I find the overnight gel helps immensely. It's weird at first, but it's wonderful.

    Jen
    "You don't have a soul. You are a soul. You have a body." C.S. Lewis

    http://www.sensinganenemy.com

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    Hi there, to chime in with eye experience:

    I had scleritis when I was first diagnosed.

    I got it again, and when my normal ophthalmologist was looking, she got suddenly worried and sent me straight to a retina specialist. Turns out I have a "retinal vein occlusion", which to me (looking at the pictures on the screen) looks like one of the veins at the back of my eye exploded. They think that it associated with either Wegener's or prednisone and have monitored it for months, but it has not change.

    I also have a cataract from prednisone, which makes my vision a little blurry.

    This study says that "
    Ocular manifestations occur in 30–50% of [Wegener's] patients".

    Good luck!!
    "Drink your tea slowly and reverently, as if it is the axis on which the whole earth revolves—slowly, evenly, without rushing toward the future. Live the actual moment. Only this actual moment is life." -Thich Nhat Hanh

  10. #20
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    I had red eyes when I was smoldering (years) without infection though. after the rtx my eyes became clear. BUT long use of pred can cause blurred vision, (I sometimes have) and cataract.
    my sweet Phil had issues with his eyes, was diagnosed with this one: http://www.geteyesmart.org/eyesmart/...n-symptoms.cfm it was not clear if it was wg related or not. he got avastin injections into the eye. he suffered from floaters in the vision. I also have them from time to time.
    Phil's brother just wrote to me few days ago that he saw an article about rare eye disease which can be diagnosed if the eyes are becoming yelllow when you take a photo. he saw that I posted on facebook a picture of Phil in which his eyes are glowing. I read about that disease which sounds similar to wg, issues of blood vessels in the eye. this is the link that his brother sent me:
    http://boredomtherapy.com/facebook-s...=6023041630884
    I wonder if one can take a picture and see if his eyes are glowing ?
    I would say that the glowing eyes of my sweetie was part of his shining spirit... I miss him... I will post the picture of him that made his brother sent me that article, in his thread.
    Last edited by Alysia; 02-28-2015 at 02:59 AM.
    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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