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  1. Replies
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    Hi, I switched from mtx oral to injection due to...

    Hi,
    I switched from mtx oral to injection due to the fact that I was experiencing extreme nausea and vomitting. I was elated the first week as I experienced no side effects after the first...
  2. Thread: New here...

    by purr6
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    5,926

    Hi Mitch, I too have issues with neuropathy in...

    Hi Mitch,

    I too have issues with neuropathy in my right foot. I am quite certain that it was not caused by the predisone and/or cytoxan as the numbness began just prior to diagnosis. I have had...
  3. Thread: eye pain?

    by purr6
    Replies
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    8,141

    Thank you so very much for all of the advice. I...

    Thank you so very much for all of the advice. I have a call in to my doctor and am going to insist on a referral to an opthamologist. The opthamologist that I saw about a year ago said that he felt...
  4. Thread: eye pain?

    by purr6
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    8,141

    Thanks Jack! I also often get slight redness...

    Thanks Jack! I also often get slight redness around the white of my eye(s) with a streak of two of redness like a small blood vessel burst, but this time it is the full white of the eye. I am not...
  5. Thread: eye pain?

    by purr6
    Replies
    15
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    8,141

    I don't get eye pain --it is more of a strain. I...

    I don't get eye pain --it is more of a strain. I also have times, (like right now) where the entire white of my one eye turns red like a broken blood vessel. I don't know what that is all about. ...
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    Thanks, Jan. Sounds like and interesting read!

    Thanks, Jan. Sounds like and interesting read!
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    No, I can't say that the pain was better on the...

    No, I can't say that the pain was better on the higher dose of mtx. I can, however say that the fatigue was worse. I think perhaps that was due to the very low white blood cell count. My doctor...
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    Thank you so much, Tim! I appreciate your...

    Thank you so much, Tim! I appreciate your response. I will try the antacid and ask about the folic acid increase as well as the injection idea. Is it a self-injection or one that must be...
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    Thank you. I will ask about the folic acid being...

    Thank you. I will ask about the folic acid being taken daily at my next appointment. I was on 20 mg of methotrexate initially, but it had to be decreased because my white blood cell count was...
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    Yes, I am taking Folic acid, but only a dosage of...

    Yes, I am taking Folic acid, but only a dosage of 5mg once per week. My folic acid is by prescription. If I increase the dosage of the Folic acid, should that dosage be over the counter and if so,...
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    I will post any other information about this...

    I will post any other information about this broadcast that I happen to get. It is exciting to see that finally there will be some attention drawn to this disease. I sometimes get frustrated when...
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    Good Morning America

    Hello Everyone,

    Good news! Good Morning America (aired from New York) on ABC is supposed to be doing a story on various forms of vasculitis including Wegener's on September 16th. I am thrilled...
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    Hair Loss and Cytoxan

    I know this may sound like a cosmetic thing, but I was wondering if anyone has severe hair loss from the Cytoxan..I am losing 3 sinkfulls of hair per day...I am lucky enough to have had very thick...
  14. Thread: Hello

    by purr6
    Replies
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    5,959

    Thanks so much for the info. I am sorry to hear...

    Thanks so much for the info. I am sorry to hear that you have had such a terrible time with things. I agree that it is soooo difficult to be treated properly when no one really knows much about...
  15. Thread: Hello

    by purr6
    Replies
    23
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    5,959

    Thank you Jolanta, I will check into...

    Thank you Jolanta,

    I will check into contacting her!
  16. Thread: Hello

    by purr6
    Replies
    23
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    5,959

    Thank you Sangye. I appreciate you sharing your...

    Thank you Sangye. I appreciate you sharing your knowledge on this. I will check out the VF for the doctor at Mt. Sinai. It was good to know about the alveolar hemorrhage as well as the urgency of...
  17. Thread: Hello

    by purr6
    Replies
    23
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    5,959

    Hi Doug, I know the feeling of walking on...

    Hi Doug,
    I know the feeling of walking on bruises--or I guess I have sometimes thought of it as walking on pins and needles. Were you taking anything to help with the pain associated with it? I...
  18. Thread: Hello

    by purr6
    Replies
    23
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    5,959

    Hi Jolanta, Thank you for your response! Do...

    Hi Jolanta,

    Thank you for your response! Do you happen to know the name of the doctor doing WG research in Ontario?
    Sorry to hear about your foot pain and numbness. I know how difficult it is. ...
  19. Thread: Hello

    by purr6
    Replies
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    5,959

    Hi Jan, My Wegeners was diagnosed after a trip...

    Hi Jan,
    My Wegeners was diagnosed after a trip to ER coughing up blood. I also had the numb foot at that time, skin lesions, sinus issues for 9 weeks prior to that, fever, weight loss, dehydration,...
  20. Thread: Hello

    by purr6
    Replies
    23
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    5,959

    Hello Sangye, Thank you for your response and...

    Hello Sangye,

    Thank you for your response and sorry about the delay in getting back to you. I am now at 20mg daily for the rest of this week and will be at 15mg daily for two weeks beginning next...
  21. Thread: Hello

    by purr6
    Replies
    23
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    5,959

    Thanks so much, Elephant for sharing your weaning...

    Thanks so much, Elephant for sharing your weaning process. It wasn't confusing at all--as a matter of fact, it was the process I was expecting. Sorry about the delay in getting back to you. My...
  22. Thread: Hello

    by purr6
    Replies
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    5,959

    Hi Elephant, Thanks so much for your response!...

    Hi Elephant,

    Thanks so much for your response! I am feeling extremely "up and down" consistent with the prednisone weaning it seems. It seems as if I don't know which end is up with the extreme...
  23. Thread: Hello

    by purr6
    Replies
    23
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    5,959

    Hello

    Hello Everyone,

    First of all, let me say that I am extremely appreciative of the existence of this website. I was diagnosed with Wegener's in December 2009 and have found it difficult to find...
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