Any WG patients in the US area and where?

Posted , 22 users are following.

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, 35 replies

Report

35 Replies

Next
  • 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?

     

    Report Reply
  • Posted

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

      Report Reply
    • 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.

      Report Reply
  • Posted

    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.

    Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up