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New, in Palm Springs
Greetings and thank you for being here. I feel somewhat encouraged to know that there are others with this ailment.
I had been choking on sputum from my sinuses for 5 years and then started coughing up sputum from my lungs earlier this year. My ENT suspected Wegener's so some tests were run. In June i started feeling weak, feverish, no appetite, ready to die. I was in kidney failure made worse by a pulmonologist prescribing Simbicort. I got off that, was given Zofran for the nausea and was able to eat again. Received fluids for 2 days for the dehydration. Tests indicate GPA and a biopsy is scheduled for early November. My rheumatologist has mandated no alcohol, no sugar, tho he kindly said i could have chocolate. All doctors have stressed lots of water.
My eyes are pinkish, my hair is falling out and I cough up sputum about 12-20 times a day. My voice is shot, but last kidney tests indicate that I am halfway to normal! I feel fine now.
Is this called being in remission?
Treatment will be steroids with rituximab and azathioprine. Should i do it?
Where am I in the progression of this thing? Did it start with the sinuses over 5 years ago, or in June when my kidneys and lungs went kaput?
Thanks for your thoughts,
Jan
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