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Type: Posts; User: TommyG

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  1. Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Hi Bay Area neighbor,
    Hope you find some answers soon. If you do have Wegener's, for many of us, including me, things are the toughest at the beginning, until you get it under control. Ten years...
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    6 years ago when I first got sick, I could not...

    6 years ago when I first got sick, I could not even walk around the block without stopping. I remember myself visualizing skiing again, riding a chairlift with my daughter. I joined a Gym and had to...
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    Hi Sperez7, I do hope your son is on the mend....

    Hi Sperez7,
    I do hope your son is on the mend. If UC Davis does not meet your needs, then you might consider Sharon Chung at UCSF. I've been extremely happy with the quality of care that I have...
  4. My doctors mainly use the lung function test to...

    My doctors mainly use the lung function test to compare it to previous tests. Mainly to check for stability or changes in my lungs. My lung doctor prefers and so do I a Lung CT to see if there...
  5. I was on pred. 7mg and mtx 12.5mg. Fortunately,...

    I was on pred. 7mg and mtx 12.5mg. Fortunately, my insurance covered the cost of the 5 hour surgery. Best wishes all
  6. I had it 2 months ago. The rib pain was much...

    I had it 2 months ago. The rib pain was much more than I expected. The first week was quite painful to move. I was on pain meds around the clock. I was off from work for 10 days. After a couple...
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    I think Sharon Chung is a wonderful Wegener's...

    I think Sharon Chung is a wonderful Wegener's Doctor in San Francisco. I 'm happy to drive an hour to consult with her. My rheumatologist in Los Gatos Lynda Lee is excellent and very up to date...
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    Dr Sharon Chung at UCSF is a great Wegeners...

    Dr Sharon Chung at UCSF is a great Wegeners Doctor. I highly recommend her:thumbsup:
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    I gained 30 pounds on pred and had severe moon...

    I gained 30 pounds on pred and had severe moon face. I started losing weight when my taper was under 10 mg. 6 months later (at pred 5mg) I had lost all 30 pounds and the moon face pretty much went...
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    I'm on 5 mg of pred.

    I'm on 5 mg of pred.
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    Ive been on pred for 4 years and was on a high...

    Ive been on pred for 4 years and was on a high dose for 6 months (40-100mg). My initial weight gain hid my muscle loss. it was a year after diagnosis when RTX finally knocked out my active disease. ...
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    I'm very sorry for you and your son. I don't...

    I'm very sorry for you and your son. I don't know if there has been other cases of Wegeners in children with similar ages to your son. However, his symptoms sure sound like Wegeners to me. In fact...
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    Welcome spaceflight Thanks for posting the...

    Welcome spaceflight

    Thanks for posting the pictures, looks like a great trip. I have fond memories of a similar three month backing backpacking trip in the Hawaiian Islands. I also came down with...
  14. Thread: Ucsf

    by TommyG
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    1,636

    I see Dr Chung and have only good things to say...

    I see Dr Chung and have only good things to say about her. I'm glad you are calling her soon. She once told me to email her if I was having a hard time getting in to see her. Her email is listed...
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    I experienced no side effects from Rtx that i was...

    I experienced no side effects from Rtx that i was aware of. More importantly, it knocked out my active disease. However, we do all react differently. Looking back cytoxan and prednisone , for me...
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    NikkiNicole, Sharon Chung is caring and...

    NikkiNicole,

    Sharon Chung is caring and competent doctor as well as a Weg's specialist. I've been very satisfied with my appointments with her. I hope you get in to see her soon
  17. Thread: Possible flare?

    by TommyG
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    I had less side effects with RTX than CTX. More...

    I had less side effects with RTX than CTX. More importantly It finally stopped the active disease in my lungs, ears and sinuses, which CTX did not. I do hope RTX works well for you. Make sure you...
  18. Thread: Weight question

    by TommyG
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    When my pred. dose was high it did not matter...

    When my pred. dose was high it did not matter what I did, I would just gain weight. I have now loss all my extra weight (45 pounds) in the last year while tapering slowly down on pred. I'm now at...
  19. Thread: Rituxan Use

    by TommyG
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    Hi Trudy It has been 10 months for me since my...

    Hi Trudy

    It has been 10 months for me since my first and only treatment of RTX. I had sinus, ear and lung involvement. RTX worked well for me unlike CTX. After RTX my lung involvement finally...
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    When I was newly diagnosed, I was on narcotic...

    When I was newly diagnosed, I was on narcotic pain patches. One morning I was showering and decided to do some yoga stretches. I bent over to touch my toes. The next thing I know I'm waking up half...
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    Thanks, everyone, for all the advice and help. I...

    Thanks, everyone, for all the advice and help. I did take your advice and met with Sharon Chung at UCSF for a consultation. I think she's a great resource for those of us near San Francisco. She...
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    Hi everyone, thanks so much for all your...

    Hi everyone, thanks so much for all your responses. Just got back from an appt with my ENT, and he thinks my nose & ear still have active problems. I'm leaning toward switching to Rituxan (hopefully...
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    Diagnosed in August 2010

    Hi,

    First, thank you. I've been learning much from this support group. This forum has helped me an awful lot in dealing with Wegener's. It has also made a big difference in my knowledge of the...
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