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Type: Posts; User: mikecaven

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  1. Replies
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    Sticky: Re: How to know when you're having a flare

    Summer, I take Rhituxan infusions twice yearly and am doing great. I developed WG in 1981. I have had 3 flares since then. The last one was in 2010. I am 72...so there is hope.
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    Re: Advise on migrating to Australia

    I read this. Not sure u have seen it?

    https://en.m.wikipedia.org/wiki/Health_care_in_Australia


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  3. Thread: Leukemia

    by mikecaven
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    688

    Re: Leukemia

    I have not had bad cance but soon after treatments I have had multiple skin cancers over the past 20 years. The Rheumatologist and Dermatologist believe it is because my immune system was...
  4. Thread: Dry cough

    by mikecaven
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    1,143

    Re: Dry cough

    I also took 3 weeks of antibiotics


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  5. Thread: Dry cough

    by mikecaven
    Replies
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    1,143

    Re: Dry cough

    I had a cough for two months. Finally diagnosed with sinusitis and Bronchiecstasis. Had sinus surgery 2 weeks ago. Now doing better. My cough was somewhat productive but was sometimes dry. I have had...
  6. Re: The scariest 14 months of my life and then Wegeners

    This recent flare, per my Rheumatologist, is indeed Wegeners. But he has referred me to lung doctor who believes I also have severe sinusitis. She sent me for CTscan of lungs and sinuses. The CTscan...
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    Sticky: Re: Wegeners Granulomatosis / GPA specialists

    Dr. John Cush,Rheumatologist, Dallas, TX. I have been seeing him for the past 11 years. He is great. He took over Dr. J Donald Smiley’s practice when he died...who I started seeing in 1982 when he...
  8. Re: The scariest 14 months of my life and then Wegeners

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  9. Re: The scariest 14 months of my life and then Wegeners

    Veronica, here is some encouragement: l got WG when I was 34 in 1981, 37 years ago. I am now 71. I had relapse in 2008, 2010, and last month. I am on Prednisone again and had Rituximab infusion...
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    Sticky: I want to be an encourager to all of you. I have...

    I want to be an encourager to all of you. I have had Wegenes since 1981. My doctor tells me I am one of the longest living. I had a relapse in 2008 and in 2010. Since then I have yearly Rituxin...
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    Let me say this. I am now 63. I first got WG in...

    Let me say this. I am now 63. I first got WG in 1981. I have relapsed twice (3 years ago and 1.5 years ago). I am back in remission now. I do suspect that I had a couple of flare ups that...
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    I truly apologize...after I wrote this, I saw the...

    I truly apologize...after I wrote this, I saw the other note. Sympathies.
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    There is hope. I had a similar experience in...

    There is hope. I had a similar experience in late 1981 and early 1982. 30 days in hospital...very ill. The only difference is I did not have as much kidney involvement (no dialysis). I went...
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    Here is a word of encouragement for your husband...

    Here is a word of encouragement for your husband and you. I first got Wegeners in 1981 at age 34. It stayed in remission until spring 2007. That was 26 years of remission for me. It came out of...
  15. Thread: H1n1

    by mikecaven
    Replies
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    H1n1

    You should follow your Doctor's recommendation...but my rheumatologist is giving me and my wife a shot this Friday. He has treated 50 Weg patients and really seems to know how to deal with the...
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    Response to 18 year old mom

    Sorry to hear about your son. There is a lot of hope for you with Wegeners treatment these days. I got it first when I was 33. It went into remission within a year. Same treatment that he is...
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    cramps

    I had the same problem when my WG was active. My belief is that mine was primarily related to the Prednisone I was on. Once I got off of Pred, the problem went away. I also found that drinking...
  18. Thread: Nose bleed

    by mikecaven
    Replies
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    nose bleeds

    Derek,
    I have some thoughts for you. I first got WG 28 years ago and relapsed about one year ago. I have had nose bleeds off and on for many years. Here is the best solutions I have found:
    1. ...
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    No I am still on Cytoxan until June but off...

    No I am still on Cytoxan until June but off predisone. The Dr. tells me I have no active symptoms...and I feel pretty normal.
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    The first time was mainly sinus and lungs with a...

    The first time was mainly sinus and lungs with a little bit of kidney involvement. This time the kidneys got hit harder...and my fingers got some vasculitis ulceration...very sore at the tips of two...
  21. Thread: Wondering

    by mikecaven
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    Wondering

    I am new to this forum. I was first diagnosed with WG in 1982. It stayed in remission until March of last year. I am back in remission now. I have a sense that WG may occur to "very healthy"...
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    Mike: 27 years without WG

    My WG disease came back a little less than one year ago. I had zero symptoms since late 1982. No knowledge as to why it returned. It took me a bit of time this time to believe that is what it...
  23. Thread: My WG story

    by mikecaven
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    FYI...one year ago I came out of remission after...

    FYI...one year ago I came out of remission after being disease-free for 27 years. I have been on Cytoxan and Prednisone since last April and just came off of Prednisone. Dr. John Cush is treating...
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