Hello, my name is Joyce. I was diagnosed with wegeners after a month in the hospital in 2013. I think they tested for everything possible when they found growths in my lungs. After being diagnosed my rheumatologist in Seattle out me on 6 infusion treatments with rtx and I was on methotrexate until I moved to las Vegas last year. Getting a new job and setting up a doctor took longer than expected and after not taking the methotrexate for 9 months I began losing my voice in December. Even with my history ny primary I set up here didn't think it was my wegeners acting up so I took it upon myself to see an ent I trusted. He recommended a throat doctor and this last Monday I had surgery to remove the growths that were around my vocal chords and in to my larynx. I've seen a rheumatologist it here twice and I don't think he's treated many with the disease because the first drug he brought up was cytoxin. I'm 28 and I didn't want to do that in 2013 because of the whole infertility. At this point after surgery I decided that maybe a baby shouldn't be on the top of my list, instead getting this under control should be. Unfortunately I now have mixed feelings as my dr gas recommended me to get a second opinion from ucla or mayo clinic. Im glad I found this forum, I'm hoping there might be some feedback because I just don't know what to do at this point. Any other las vegans out there that found better treatment?
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