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Type: Posts; User: Donna-from-Philly

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    XnCelt, I'm by Valley Forge. We are practically...

    XnCelt,
    I'm by Valley Forge. We are practically neighbors.
    Donna
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    I am by Valley Forge but wouldn't mind meeting up...

    I am by Valley Forge but wouldn't mind meeting up somewhere in the middle. Just let me know.
    Donna
  3. New to disease, forum and questions

    Hi and welcome. I have found lots of great advice on this forum for, things to ask doctors, medications and side effects and lots of love and encouragement from this group.
    For me the biggest...
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    I would add my concern with the others. My blood...

    I would add my concern with the others. My blood work didn't indicate Wegener's at first. The doctors at first weren't treating me for it. I kept getting sicker. I changed doctors after 6 months and...
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    Welcome!! My chemo nurse said she just went to a...

    Welcome!! My chemo nurse said she just went to a conference and that Wegener's diagnosis is on the rise. They think it's because of better diagnosis tools.
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    XnCelt I first went to U of Penn and had a...

    XnCelt
    I first went to U of Penn and had a horrible experience. The doctor wanted to use me as a case study and follow a less normal protocol of low doses of prednisone. I kept getting sicker and...
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    I live by Valley Forge and have had symptoms of...

    I live by Valley Forge and have had symptoms of Wegener's since 2011. I personally had a less than positive experience with a University of Penn doctor. I felt like I was a lab rat and even though I...
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    Welcome to the forum. I live by Valley Forge and...

    Welcome to the forum. I live by Valley Forge and I've been a member for a couple of years and have been more "tuned in lately". I have involvement in my sinuses that traveled to my left optic nerve...
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    My doctor said it was very important to try to...

    My doctor said it was very important to try to drink a lot of water in the six to eight hours after taking the cytoxin. And to never hold your bladder during that time.
    I take a sleeping pill every...
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    I have a huge extended family that is over 1000...

    I have a huge extended family that is over 1000 miles away that is always asking about me so I keep a caring bridge blog. Only people I invite see it. I use it to keep my loved ones updated and it...
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    Mine is a current picture of me taken by my...

    Mine is a current picture of me taken by my daughter at my son's marching band competition. I enjoy supporting my kid's events. I am a mom first and with my youngest heading to college next year it...
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    Vacationing with Wegeners

    Stay close to the venue so that you can go back and rest. Sit down. At functions everyone stands and talks. Sit down while you wait. Rest up as much as possible before the trip. Let your doctor know...
  13. Welcome to the site. It has been a huge source of...

    Welcome to the site. It has been a huge source of info for me. I just recently realized how rare of a disease this is. Your story is amazing. My son is 17 and I can't imagine having him be diagnosed...
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    I was 42 when diagnosed in 2011. My husband of 18...

    I was 42 when diagnosed in 2011. My husband of 18 years had left me in 2007. I was raising two teenagers and in 2008 I met a great guy through work. Anthony was in the process of selling his house...
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    I agree after awhile you know your pain and there...

    I agree after awhile you know your pain and there are times when nothing works better than a quick dose of high prednisone and then come back down. It's like sometimes you need to go up hill so you...
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    Welcome Sophie. My best friend is a patent...

    Welcome Sophie. My best friend is a patent attorney here in the states. It would be hard to have WG and maintain such a stressful job. I hope you have been able to find a good balance.
  17. Anytime I started icing my face it was a sign of...

    Anytime I started icing my face it was a sign of a flare up in my sinuses.

    I have interviewed two acupuncturists who strongly discouraged me. Stating that it could trigger a flare up. As mostly...
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    I am a patient with a pain clinic and the doctors...

    I am a patient with a pain clinic and the doctors recommend OxyContin and oxycodone. In fact my doctors have said not to take Advil, Tylenol or Aspirin because of the side effects. My one doctor...
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    Change is always difficult especially when we...

    Change is always difficult especially when we have a diagnosis that causes such chaos. Losing the daily contact with someone that understanding and supportive is very significant. It's no wonder...
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    I was on cytoxin; drink lots of water after you...

    I was on cytoxin; drink lots of water after you take it and visit the bathroom often in the hours you take it. 40 mg of pred is difficult. Get up and walk around as much as possible at work. My...
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    I am on budesonide as well. My doctor said it is...

    I am on budesonide as well. My doctor said it is a diluted steroid. It seems to be working well. I'm sleeping so much more comfortably.
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    I have had this disease while raising two...

    I have had this disease while raising two children. The oldest is in college and just gave a speech about WG in her communication class. My son wants to study physics to make medical machines run...
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    "Pretty much routine" is a good thing! I think...

    "Pretty much routine" is a good thing! I think it's a goal we all strive for especially after so many flare ups. I'm always surprised after a flare up how I am always blind sided. Once up on the...
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    Wow loosing pituitary function is huge! It would...

    Wow loosing pituitary function is huge! It would be a lot to keep all the meds going. Being very careful not to miss any. I had trouble leaking cerebral fluid. Did anyone else have that?
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    I drop 1mg every 4-6 weeks. From 15 to 5. I had...

    I drop 1mg every 4-6 weeks. From 15 to 5. I had no problems with the tapers until my recent flare up. Now I'm up to 20mg and changing everything. I've been doing this since 2011 and the longest I've...
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