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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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  • susan4321
    susan4321 linda98568

    Posted

    Hi - I am 51 yr o lady from Minnesota - just diagnosed this summer after a bout of wierd and complicated pneumonia - I could not get off the prednisone without lung difficulty returning despite the virus/ acute illness seeming to be gone. Then they found elevated antibodies, and combined with some eye difficulties the rheumotologist arrived at WG...

    So I've been on prednisone for a few months, had one collapsed lung and wore a chest tube hanging out of me for two weeks (Aaackk!), and had 4 Rituxin infusions over 4 weeks recently.  Doc at Mayo ordered a Bronchoscopy and found lesion-ish infected-looking patches in my lower bronchi of one lung - so upped the prednisone again - but the cultures so far from lungs show no growth - so that's good news. Also, my doc at Mayo prescribed a topical steroid (inhaler) which has completely made my cough disappear!!! Fluticasone / Flovent - it has been amazing relief to the cough and breathing - I inhale 2 puffs, morning and night. Finally sleeping really well after months of exhausting coughing during sleep. ( My spouse is ultra-grateful too!).

    I find the tingling behind my eyes, in my throat, and deep in my right ear strange and I wish I knew exactly what this sensation means is happening. Does anyone else experience anything like it?

     

    • 20yrsandok
      20yrsandok susan4321

      Posted

      More than likely sinus related that is one symptom I could never quite get rid of. I suffer vertigo more than the average person. Be sure to tell your Dr. so he can look into it.
    • susan4321
      susan4321 20yrsandok

      Posted

      Thanks for your reply.  Now its 3 yrs later and i sometimes forget i am living with this condition and feeling lucky.
    • jeffery_ow73565
      jeffery_ow73565 susan4321

      Posted

      I'm 4yrs since dianoisted, been in remission for almost 2 yrs. Feel greatful everyday!

    • jeffery_ow73565
      jeffery_ow73565 susan4321

      Posted

      I'm 4yrs since dianoisted, been in remission for almost 2 yrs. Feel greatful everyday!

  • jac08
    jac08 linda98568

    Posted

    I live in Amarillo, TX.  Dx’d in 2016.  Have learned a lot here and appreciate hearing from others with this “rare” disease.
    • john64113
      john64113 jac08

      Posted

      I was diagnosed in Sept with WG. Have had three hospitalizations. Have finished four treatments of Ritaxamed and have to wait six months to see if my body goes into remission. I will then have one more immunotherapy treatment. Have decreased my prednisone from 60mg to 15mg. I am going to join a support group in San Antonio, Texas.  
    • jac08
      jac08 john64113

      Posted

      Hi John, we are practically neighbors😊 Sorry to hear that you’ve been in the hospital 3 times.  Just one for me, for 31 days...2 Times on the ventilator, plasmapharesis and Rituxin.  I just had my 5th infusion since the hospital and am scheduled for my 6th in spite of finally getting a negative ANCA back.  Although i don’t have any side effects of it, I certainly don’t want more than I need.  Thoughts anyone?

    • 20yrsandok
      20yrsandok john64113

      Posted

      A support group that is amazing. It helps when you feel that you are not alone. When I was diagnosed it took along time for me to accept it all. I wish you the best of luck in your journey to recovery. It can be done as I have been in remission now for over 18 years and still going. I have only had one flare up in that time but it didn't last long because I caught it early. Never heard of the med that they are giving you but must be making strides. Prednisone always helped me be able to bounce back to feeling like my old self.

    • john64113
      john64113 20yrsandok

      Posted

      It’s encouraging to hear you have been in remission. 

      Thanks for your message. 

  • 20yrsandok
    20yrsandok linda98568

    Edited

    I live in Illinois. I was diagnosed in 1994 at the age of 29. I have been in remission I would say for over 18 years. I am 53 and am starting to learn of some of the effects the WG had done to my kidneys and liver. I have been told that I am in stage 3 of kidney disease and my liver functions are below normal. I was just told yesterday that my kidneys are spilling a lot of protein so I am being referred to a nephrologist for care. I knew that when I had come so close to death at the age of 29 that my life span would be shortened but now all the organ damage I am seeing it kind of makes it clear. I just thank God that he has given me the chance to live this far past 29 years. My son was 9 then and I have got to see him grow up and have kids of his own. I don't know what the future holds but after my WG experience I have learned to hold every day precious and take it as it comes.

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