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Any WG patients in the US area and where?

Posted , 26 users are following.

linda98568
linda98568

Hi All:

I'm located in the Washington state area, was just curious how many US based WG patients are on this network?

1 like, 39 replies

39 Replies

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  • diane52018
    diane52018 linda98568

    Posted

    I'm from Portland, Oregon.  Diagnosed in October 2010.  Rough in the beginning, off work for 5 months. Have been receiving Rituxan every 6 months for the last few years.  Not sure what's ahead but think I'm doing well.

  • Tona_S
    Tona_S linda98568

    Posted

    I was diagnosed in November of 2016 at the age of 52.   I live in Ohio
  • Poofist
    Poofist linda98568

    Posted

    Hi!  I was diagnosed in 2009.  Been through a hell of a lot!  I live in the Houston, TX area.  Would love to find a support group here in the city, but have not been able to locate one so far.
  • sue5879
    sue5879 linda98568

    Posted

    Hi Linda,

    I am 63 and live in Kansas.  I was diagnosed 4.5 years ago and was left with permanent lung damage.  Prednisone, Rituxamab and Azathioprine pushed it into remission until 1.5 years ago when I had a flare up.  This time it attacked my kidneys.  In 3 days I went from having perfectly normal healthy kidneys to stage 4 renal failure.  My kidneys will never recover but I am Blessed that I am not on dialysis and they have not gotten worse.

  • nicci49664
    nicci49664 linda98568

    Posted

    Hello,

    I am in Utah, my 17 year old son was diagnosed 2.5 years ago.  He is in remission now but not without long term damage.  He has stage 3 kidney disease.  It is reassuring the hear some long term story's.  Thank you for sharing.

  • fatima80236
    fatima80236 linda98568

    Posted

    Hi linda..I live in kirkland wa. I have had wegners since 1997. I was diagnosed at the University of Washington medical center when I was only 21 years old, so been battling this for a long time. Just had a recent major flare up in October and am getting rituxin treatment and high doses of prednisone. It's been a really rough few months. Doesn't look like rituxin is working so I think we need to try cytoxen. Where are you currently being treated. I have been seeing a team at Virginia Mason for my care. 

    • 20yrsandok
      20yrsandok fatima80236

      Posted

      I was diagnosed in 1994 at the age of 29. My lungs were seriously effected I have asthma like symptoms but not asthma. I also went into menopause shortly being diagnosed. Everything was going good as far as remission but am now finding out that I am in stage 3 chronic kidney disease and liver disease. I was told my kidneys had been effected but after going through old records it looks like I was in stage 2 for quite awhile. What long term effects have you experienced and did you go through menopause early too. I haven't talked to anyone in the same age of diagnosis as I and just wanted to reach out to see what others are experiencing.

  • susan4321
    susan4321 linda98568

    Posted

    Hi Linda,

    I am in Mpls, MN and was diagnosed in 2015. I am 54. Good question!!

  • marie96185
    marie96185 linda98568

    Posted

    Illinois.

    WG since January 2014 .

    In Remission now.

    I am 81 years old

  • lori63170
    lori63170 linda98568

    Posted

    Hello, We're in SE KS!!  Husband was diagnosed in Dec 2017 and spent 44 days in hospital most in ICU on a ventilator!!  Had to relearn all mobility.  Out of hospital mid January, doing well, but will probably not be able to go back to work! 

    • jac08
      jac08 lori63170

      Posted

      Hi Lori,  My situation was very similar.  Admitted through the ER with what they though was pneumonia, developed DVT in my leg , while they were trying to figure things out, on the vent twice, plasmapharesis, in ICU and hospitalized 31 days, had to relearn how to walk.  Sorry to hear that he can’t go back to work.  I was able to fairly quickly, but have a desk job.  Where is his specialist located? On Rituxin?
    • lori63170
      lori63170 jac08

      Posted

      Rheumatologist is located in Wichita, KS. He started with Cytoxan and finished with Rituxan in March.

      His first hospitalization diagnosed him with Fungal Pneumonia n released him, a week later on Thanksgiving Day we ended up in local ER!!

      All of our Specialists are out of Wichita, and we are pleased with all of them, their communication between themselves is great also!!!

      Wegeners seems to have damaged his lungs, he had a very physical job, so between the lungs, the vasculitis in his fingers & neuropathy in his feet, it's taking a little bit to get healed up!!!  He's down to 10 mg of Prednisone n hopes to go lower!  He's mobile & can drive, so he gets out and does things just has to set his own pace!!!

    • jac08
      jac08 lori63170

      Posted

      Yeah, I had tested positive for the flu two weeks prior to my ER trip. Not sure if that was accurate or not, but it’s not a disease that’s easy to diagnose.  I was dx’s two years ago this month.  Still taking Rituzin infusions every 4 months.  Haven’t been on prednisone for a while. But, about to do an adrenal function test...they are thinking my adrenals are not recovering after all the prednisone I was given.  I felt really good on low dose prednisone, now have serious fatigue.  But, the prednisone caused osteoporosis.  So, it’s like a puzzle trying to figure it all out.  Glad you have a good medical team. I feel like I do too in spite of our location.  I am very curious to know what others are treated with at this point in the process.   Keep in touch!
    • jac08
      jac08

      Posted

      Ignore the typos above...autocorrect 👎🏻

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