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Thread: eyes involvement ?

  1. #71
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    Quote Originally Posted by mishb View Post
    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?
    He didnt suggest to increase the pred. He even said that he wish me to be off pred but he understand that I cant reduce it. Maybe he didnt suggest because I already got some pred like eye drops.
    We allways look for the pred, you & me, since the good old days when we tried to convince my sweet Phil to take more...
    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.

  2. #72
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    Quote Originally Posted by Pete View Post
    Alysia, your WG Doctor is a keeper. Hope he can get the disease under control and that you feel good.
    Thanks Pete. Your support and wisdom means a lot to me.
    I never heard the word "keeper" but today, twice: from you & from Phil's friend who called me a keeper. I guess it means something like guardian.
    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.

  3. #73
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    Quote Originally Posted by Alysia View Post
    Thanks Pete. Your support and wisdom means a lot to me.
    I never heard the word "keeper" but today, twice: from you & from Phil's friend who called me a keeper. I guess it means something like guardian.
    Guardian could be part of it, but it means more that the doc is someone you will keep, and stay with, rather that looking for a replacement, because of his excellent qualities that you have reported to us. Phil called you a keeper because you were the best girlfriend he could imagine, and you and he fit so well together, there was no reason for him to think of anyone else.
    Anne, dx'ed April 2011

  4. #74
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    Quote Originally Posted by Alysia View Post
    We allways look for the pred, you & me, since the good old days when we tried to convince my sweet Phil to take more...
    There is/was good reason for that
    I always thank pred for being my lifesaver
    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

  5. #75
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    Quote Originally Posted by annekat View Post
    Guardian could be part of it, but it means more that the doc is someone you will keep, and stay with, rather that looking for a replacement, because of his excellent qualities that you have reported to us. Phil called you a keeper because you were the best girlfriend he could imagine, and you and he fit so well together, there was no reason for him to think of anyone else.
    Just re-read what you wrote and saw it was Phil's friend who called you a "keeper".... that's even better, in a way.... we already knew Phil felt that way and he didn't have to say it.... when one of his friends said it, that was a high compliment!
    Anne, dx'ed April 2011

  6. #76
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    Not sure what to do... 10 days or so with the new drops. No change for good. Even a bit worse (but not as worse as while I had the Episcleritis). Eyes still red (lots of blood vessels on the white), burning, now also itchy feeling like I want to scratch the eyes, (not related to drops use) getting tired very fast from reading, forehead aching.
    There is still month to wait untill the rtx of January will reach its full influence. And even if I will get another one now, it will not influence now but in months..
    My eye doc went to vacation. I can go to another one but I cant think of enduring again all those torture tests. But maybe I should ? Problem is that I am also tired like hell. Sleeping 10-11-12 hours at night, waking up to change shirt from sweats every other night.
    Maybe I should just be patient and wait ? Find another eye doc ? Most of them know nothing. Mine at least, although knows nothing, is my dr. 18 years so he is caring...
    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.

  7. #77
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    This may be a stupid thought, but could it be that you're allergic to the eye drops? Perhaps a test dose of Benadryl might relieve the itching/burning symptoms. It definitely would not help with the fatigue though.
    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

  8. #78
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    All that night sweating sounds too much like a WG flare. Unless it could be menopause. When I was first acutely sick, right before dx, I had red eyes, and probably itchy, I don't remember. No one paid much attention to them as I had bigger issues. But I found the redness would clear up when I used Baucsh and Lomb "Allergy Eyes" drops, OTC at the drug store. Then, with treatment for WG, the problem cleared up. This may not relate to your situation, as I didn't have episcleritis or anything like that..... just reporting my experience.
    Anne, dx'ed April 2011

  9. #79
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    Not stupid at all, Pete. Thank you. I also thought that the itchy feeling might be a reaction to the new drops. So I tried not to use them. 20 hours. Couldnt more. My eyes became too red. But not itchy. Now, after using them, still red and itchy. I wonder if I can use back the previous drops on my own ?? The eye dr. Said that its not safe to use them too much. How much is too much ?
    my eyes are getting worse again.

    Thanks Anne, for always being kind and sweet. I love you. Thanks for your comments about "keeper". I am not sure if Phil's friend said that I am a keeper from his point of view or from Phil's. Anyway, Phil is my keeper ♡♡♡
    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.

  10. #80
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    Doesn't sound like much fun

    Eye drops don't have a long shelf life once opened, I think the longest is about 20 days.
    Please don't go back to the other eye drops, not just for this reason, but also because they may not react very well to the other drops and could cause more damage to your eyes.
    It certainly sounds like you are allergic to these new drops though.

    You will do more harm to them if you change the drops or continue to use these ones, therefore I think that, for the sake of your sight, you should go and see the other eye doctor, or get to the ER so that they can assess the situation. Your eyes are too important.

    I hope they come good really quickly
    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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