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Thread: eyes involvement ?

  1. #61
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    That's good news.

  2. #62
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    Alysia, i sent you an article on this from dr. Foster. But im posting here for others as well. Yes without a doubt this is wegeners related! How can ge say if he knows not wegeners? And yes dry eyes also can come from wegeners. In my beggining i had scleritis, and after the pred drops, i develped extremely dry eyes, no tears, at all! Sjohrens type symptoms and this lasted about a year and a half. Now tears are back, but the eyes continue to be an issue. Right now acting up alot, and i will be seen up here, but trying hard to get to dr. Foster, as i beleive my diagnosis is in his hands... When speaking to his office, he was pretty horrified, to say the least, that docs are not looking at my eyes as a tell tale sign, along with all my symptoms. Again my primary is on board with wegeners, but the so called specialists havent even seen it... Alysia, if you can get the ct scan of youre eyes, i would go for it... Please dont let this man tell you its got nothing to do with wegeners! He will give you a very false sense of security... Doctors need to know how autoummune diseases effect the eyes!!!!!!! Maybe if you continue with him, you can print out the article? Maybe bring articles on wegeners itself, also? The sustayne drops will releive dryness but not much else... The eyes are the mirror for whats happening inside... A window, if you will... Good luck, Alysia... Eye involvement is very scary... Debra... Sorry, in advance for typos!
    Live,love,and laugh...

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    Alisia, a couple of follow up comments.
    my eyes were blood shot for about a 5 months before we finally got on to it. It started as very minor and progressively got worse. In my case I would now use this as an early warning sign. Absolutely Wegeners related.
    The drops I had were predneferin.
    For a doctor to say that its not Wegeners related and then to admit he knows nothing about Wegners is one of the most ridiculous things I have heard. What planet is he from? Sounds like my first ENT who told me that nerve damage in my ears was permanent...... but my hearing comes and goes.... unbelievable.
    Good luck with it. Stay vigilant.

  4. #64
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    Thank you so much, my dear friends for your caring and kindness and wisdom.
    I will sure keep an eye on the eyes. I hope I can set a meeting with my wg dr. to ask him all about those, and to think if I need another rtx or just to wait more for the full influence of the 1000 mg that I got on January. I should have listened to him when he suggested 2000mg and I asked for only 1000 mg. my mistake.
    day 2 of the new drops: eyes feel less burning. I still see many blood vessels on the white of it. also feeling very tired.
    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.

  5. #65
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    I'm glad to hear the episcleritis is gone, and that it was a "light one". But you are extra tired, there could be something like a flare going on or starting; it won't be too long before your next RTX, hang in there!
    Anne, dx'ed April 2011

  6. #66
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    Quote Originally Posted by Alysia View Post
    Thank you so much, my dear friends for your caring and kindness and wisdom.
    I will sure keep an eye on the eyes. I hope I can set a meeting with my wg dr. to ask him all about those, and to think if I need another rtx or just to wait more for the full influence of the 1000 mg that I got on January. I should have listened to him when he suggested 2000mg and I asked for only 1000 mg. my mistake.
    day 2 of the new drops: eyes feel less burning. I still see many blood vessels on the white of it. also feeling very tired.
    Mine were about 4 weeks before the blood vessels cleared from the whites of my eyes so it can take a while.

  7. #67
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    Alysia..I went to see my optomologist (sp?) today since my eyes have been blurry and she said it was not due to wegs,that if it was they would be red and painful. Good for me not so much for you . She told me a to get some Refresh Gel drops and also to get an humidifier ( which we have ). I hope your are getting better and the rtx kicks in soon
    Life isn't about how you survive the storm, but how to dance in the rain !

  8. #68
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    Wow. My wg dr. is very sweet. Since I sent him the email about the Episcleritis 10 days ago, and seeing him today (his secretary called me to come, someone cancelled, otherwise it would be only on Thursday) he presented my case in front of his collegues. Consulting about me.

    Keith (Titus) wrote to me on his last thread:
    (I copy: ) ".The smoldering GPA seems to make some doctor's stumble.Full blown GPA is easier for them."

    Very true.

    My wg dr. said (being honest with me) that they kind of scratched their heads. Not knowing what we should do. Not sure at all.

    He said that there are some issues in my case that make it more unclear how to treat me. He said that since its not wg in the kidneys and my lungs are not at risk most of the time, a more aggresive treatment seems to be less justified. On the other hand, he said, that over the years (we are together since 2008) most of the time my wg is active. Although not in a dramatic way but he said that it is still causing damages and most of the time my wg is not under control. The third problem is that I am very sensitive and reacted bad to meds. For example like imuran (crazy vomitting and diarhea). And the next problem is the conflict between suppressing the immune system and quieting wg, vs. Making me more exposed to infections, especially crazy UTI's. (And then diarhea because of the antibiotics). He also said that we need to be careful not to create germ which resist the antibiotics in me.

    So, he presented all this to me. Like he presented to his collegues. Seems that he made a serious thinking. He said that there is no obvious or clear way to treat me.

    His plan is this: he wants me to be back on sulfa (bactrim) starting tomorow to protect me from infections, once he will treat the wg more aggresively. Then he said that the rtx (that I got on January) is not yet fully at work. So he suggested to wait 5-6 weeks. Then Do labs again and send to his email. Then he will decide how soon will I get the next rtx.

    I was on sulfa in the past untill it elavated my liver enzymes to abnormal, so I will have to keep an eye on this as well.

    He also said that as he see my case, it is very possible that my dry eyes are wg related although it is not common.

    It was heart warming and giving a feeling of safety to hear how he was thinking about me and consulting and caring. Also being honest with me about it all. So there is a plan.

    Thank you, my friends, for your comments and support and for being here with me.
    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. #69
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    Alysia, your WG Doctor is a keeper. Hope he can get the disease under control and that you feel good.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  10. #70
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    That's a great report Alysia and a wonderful doctor.

    Did he increase your pred at all? I know none of us like an increase but maybe it will help quicker.
    I know you put it up by yourself, but did you tell him and does he think it's the right level?
    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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