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Thread: Confirmed Diagnosis

  1. #31
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    Yes, the big boogers, etc do go away. They're easier to manage if you rinse your sinuses regularly.

    I take 10 mg/day of Claritin and 20 mg/day of phenylephrine to keep the sinuses dry and clear. I've been doing this almost since I was diagnosed. My pulmonologist suggested this. Please check with your doc before taking a supplement or OTC med.
    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

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  3. #32
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    Why do the Doctors call them "crusting" they are snot

  4. #33
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    Quote Originally Posted by John S View Post
    Why do the Doctors call them "crusting" they are snot
    More "polite" than boogers or snot?
    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

  5. #34
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    The drainage from the sinuses can dry and attach to the nasal passages. These "crusts" can become very dried and hard and cause bleeding when removed when hard. Rinsing helps soften them up and makes them easier to flush out. Some times it can take a lot of rinses to get things feeling clean and clear again.
    Knowledge is power! Wisdom is using it to make good decisions!

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  7. #35
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    Yeah, I've had these large wooly bears from my nose on a regular basis since last June. Every time I bring one out I think of a line from the movie "Spawn" where the evil clown (played by John Leguizamo) sneezes and says "You think it's funny but it's snot"

  8. #36
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    It's been a month since my first infusion. I am down to 20 mg of Prednisone, will taper to 17.5 tomorrow. The granuloma annulare sores on my hands are almost completely gone. I still wear sunglasses and a large brim cap whenever I'm in bright light. I feel more awake but I am still napping a bit. The nasal crusts are still very large and frequent.
    My wife, who is my wellness barometer, says that I am looking better. I plan on trying to ride my bicycle today.

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  10. #37
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    Quote Originally Posted by John S View Post
    It's been a month since my first infusion. I am down to 20 mg of Prednisone, will taper to 17.5 tomorrow. The granuloma annulare sores on my hands are almost completely gone. I still wear sunglasses and a large brim cap whenever I'm in bright light. I feel more awake but I am still napping a bit. The nasal crusts are still very large and frequent.
    My wife, who is my wellness barometer, says that I am looking better. I plan on trying to ride my bicycle today.
    Are you doing lots of sinus rinses for the crusting? it takes a while to get them healed but rinsing helped me.
    Knowledge is power! Wisdom is using it to make good decisions!

  11. #38
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    Every day!

  12. #39
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    Quote Originally Posted by John S View Post
    Every day!
    You can rinse more than once a day. And some people found they had to rinse several times at once or use a couple liters rinse to get some tough stuff dislodged. One doctor told me you won't over rinse.
    Knowledge is power! Wisdom is using it to make good decisions!

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  14. #40
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    During the 18 months of well intentioned doctors fighting my symptoms, my eyes changed a lot. My eyes were some of the first manifestations of the disease. I had double vision for awhile, followed by my right eye swelling up and almost hitting the lens of my eye glasses. One of the diagnosis was Optical Pseudo-Tumor.
    In the course of treating these symptoms, I took a lot of Prednisone, which caused additional problems. My cataracts got so big that both eyes were operated on last fall. I had the less expensive lenses installed so I need to use reading glasses for close up work. A month after the cataract surgery I got a prescription for reading glasses. They worked fine for 2-3 months and then my eyes changed. I suddenly needed a much stronger pair of readers.
    Now that I am on Rituximab and have cut back the Prednisone to 15 mg, it seems my eyes are changing again.

    Has anyone else experienced this phenomenon?

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