New to Wegener world

[3dottrs]

Hi... I’m Cathy and was just diagnosed with GPA June 15th 2018...after 6 months of bronchoscopies..CT guided bronchoscopies..lung biopsy finally a name was given to my ailment.. My story started upon returning from 10 day Disney vacation ... day after returning home I became very ill... thought it was flu but after 2 X-rays was diagnosed with pneumonia...then CT was performed and I was told the nodules on my right lung were cancer!! ..I was then referred to a pulmonologist who performed 30 biopsies but no cultures and lots of blood work but stated it was not cancer and he didn’t know what I had but they would keep searching..PET scan... more CTs done.. by this time the 3 small masses had taken over right upper lobe of my lung and needless to say I was scared! I sought a second opinion and luckily this pulmonologist performed more blood test right away suspecting wegeners...she was on the right track and immediately got me with a Thoracic surgeon who removed a nodule from my lung and the report confirmed Wegeners!!!
My new pulmonologist once again got me in with the rheumatologist to get started on treatment...
I started on a very high dose of prednisone (60 mg) but had to cut back to 40 as the high dosage caused an AFIB incident...so currently I’m on 40mg daily.. Folic Acid daily and methotrexate weekly..had to hold off on Bactrim as I had a reaction... this also makes me worry as all I’ve read state Bactrim is important..
I will have my one month followup on the 23rd and this will be addressed then.
I feel very fortunate that my kidney and liver functions are normal !!!
I am terrified of this disease and did reach a very very low point the first 2 weeks in.. I have come to grips with it now but there is still so much to learn..
So far things I’ve seen happen are nose bleeds...coughing blood but this has finally stopped.. swelling of left ankle.. Wegener rash on leg..hot flashes .. my voice has been taken to a hoarseness..tiredness (this is improving) vision changing...in the beginning chills and fever ( no longer have this)
I don’t want this disease to control my life therefore I will continue to learn as much as I can.. make changes where change needs to be made but I want to live a life as close to normal as I can!!!