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Thread: Hair Loss.....

  1. #11
    Join Date
    Apr 2011
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    Olympia, Washington
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    Default Re: Hair Loss.....

    Hi, RandS,
    Welcome to the group! I'm sorry your husband has GPA, giving you a reason to come here. I haven't seen cutehair on here for awhile, though she could see your post if she is notified or checks in . I have never had those ulcers, but can certainly relate to the hair loss. I would suggest that you write an introductory post to the general membership so that more people will see it. Although you may get some response here, and I hope you do. The main page of the forum will show a section for new members stories and introductions, and you'd be starting a new thread. I haven't been there for awhile because I use Tapatalk on my phone to keep up with the forum. So maybe you did post an intro and I missed it! It's not a requirement, but I think people always take notice of a new member. I'm glad you found us, and best wishes to your husband in getting control over this wacky disease, and to you for being a caretaker.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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  3. #12
    Join Date
    Feb 2013
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    Israel
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    Default Re: Hair Loss.....

    Quote Originally Posted by RandS View Post
    Hello cutehair2013, I'm new to this site. I am a wife to a GPA patient. I read your post, sounds alot like my husbands symptoms. You did mention leg ulcers. Can you tell me more about those. My husband has a real bad one, he has had for over a year. Tried many things for it. The one drug that was working was Dapsome. It was causing lung problems. So the docs took him right off of it. Now he is taking Mycophenolate. He has now broke out with around 10 ulcer spots!
    Welcome to the forum. I think that the new ulcers means that the wg is not treated strongly enough. Can you consult with wg expert and ask for another treatment ?
    Like Anne wrote above, if you start a new thread, more friends can notice and relate.
    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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  5. #13
    Join Date
    Jun 2017
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    Default Re: Hair Loss.....

    My situation was similar to GoldenJen....it was the prednisone that caused my hair to become brittle and break....I feel like I lost about half my hair...but maybe it wasn't that bad...just feels that way at the time! About 9 months ago I came off pred entirely and since have noticed waaaaaaay less breakage. Sorry that you're experiencing this symptom as well! I say dye it hot pink & call it a day!!!

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