Hello All

I am new to this forum and I am not even diagnosed with Wegener’s Granulomatosis. In fact I am not really diagnosed with anything specific. My Diagnosis is “Autoimmune Lung Disease with a component of Vasculitis”. I am hopeful that I might get some answers in this forum. I will start at the beginning of my story. My apologies for the length of the “story” but I feel I need to include everything I can remember and think is relevant.
In March of 2013 I start to notice that I was having some difficulty with shortness of breath. This continued and worsened until the middle of March when I went to a local walk-in clinic and was told I had a cold and was given a prescription of Amoxicillin. I took the prescription and it did nothing for me which was not unusual because Amoxicillin does not ever work for me. On the 6th of April I just could not breath properly anymore and my boyfriend took me to the emergency department of the hospital. While there the standard blood test and chest X-Ray was done. They said they needed further test and did a CT Scan. Upon checking it they noticed I had what they called shatter glass or ground glass nodules. They called another hospital that had a Pulmonary Doctor on call and sent me to that hospital to be admitted immediately.
I was put on 50mgs of Prednisone and I spent a week on the hospital. During this time many blood tests and X-Rays were done and eventually a Bronchoscopic Biopsy was performed on my lungs. After this I was discharged from the hospital to await the results of the Bronchoscopic. Sometime in this time frame an ANCA blood test came back positive for Wegener’s. It was also during this time that I mentioned to Doctor that I had rash on my lower back/butt. I had thought it was Psoriasis, which I do have, primarily on my hands and feet. I was told it was Shingles.
The Bronchoscopic biopsy came back inconclusive. Doctor decided I needed an Open Biopsy to confirm Wegener’s as Doc wanted a 70% confirmation. This biopsy was finally scheduled for May 15, 2014 and I was told to stop prednisone 2 weeks prior so it did not interfere with the Biopsy. This also came back inconclusive. It showed I had past Vascular activity but it was not currently active. Further blood work (ANCA) tested negative for Wegener’s. Biopsy was referred to three different Pathologist for review and they could not diagnose me!!
I continued taking 50mg of prednisone and continued to see my Pulmonary Doctor every month. In August I was given the OK to start tapering the prednisone doses to see what would happen. I did this and was finally off prednisone by Christmas! Ya! Not! I hurt so bad that the Doc figured my adrenal gland was not making the naturally occurring steroid and I had to stay on 5mgs.
About the second week of March 2014 I knew that whatever I had was coming back. I went to see Doc and sure enough x-rays proved me right and I had to go back on 50mgs of prednisone. I was also referred to a Rheumatologist. It had this appointment at the end of June 2014. During this appointment I saw 3 different Doctors and was told I have Wegener’s (mild case), Fibromyalgia, Irritable Bowel Syndrome, and Psoriatic Arthritis (mild case). I just figured I was a walking disease! Their suggestion was that I start taking Cytoxin along with the prednisone. My Pulmonary Doctor agreed that I should take the Cytoxin. I did not want to take it because I had done research on it and knew it had a lot of bad side effects. I still did not have the 70% confirmation of Wegener’s that Doc said I needed. I asked for a second opinion and was referred to another Pulmonary Doctor. In August I developed a rash and also had a urinary infection that took 2 rounds of Antibiotics before it would go away. I should also mention that for the past 15 years I struggled with sinus infection and from the onset of this illness I have had several sinus infections.
During August, with Docs permission, I started to taper off prednisone once again. About the middle of September I discovered I had Type 2 diabetes as a result of the prednisone and weight gain(50 lbs) and my blood pressure, which was already high before unset of this "disease" was high and I had been on meds for, was skyrocketing.
I saw the Pulmonary Doctor that I was referred to at the beginning of October and she ordered a CT Scan, sinus x-Ray, chest X-rays and blood work. She also told me to continue the taper off prednisone and see my family doctor to get diabetes and blood pressure under control; I am still struggling with this. I saw family Doc on Oct 21st and was put on 500mgs Metformin for diabetes, and 25mgs Hydroxyzine for rash.
I returned to see second opinion Pulmonary Doctor on October 30th. At this time the rash I had started getting in August was almost unbearable (itchy). Doc referred me to a Dermatologist. Doc told me that after reviewing all my past and present test and having a conference call with the Doctors that were involved in my case (first Pulmonary Doctor, Pathologist, Rheumatologist etc.) they still could not specifically diagnose me but decided to call it "Autoimmune lung disease with a component of Vasculitis". The suggestion was that I go on 50 mgs of Imuran for the first 2 weeks then go up to 100 mgs. I was also told to stay on 25mgs of Prednisone for a month then continue to taper at a rate of 2.5mgs every 2 weeks. I did some research on Imuran and last week contacted Doc insisting on TPMT genetic test to see if I should take it. Doc had not heard of this test, researched it and said I could have test if it would make me feel better. I am awaiting test before starting Imuran.
I saw Dermatologists on Nov 5, 2014. She did a skin biopsy of rash, increased the dose of Hydroxyzine at night and added a daytime antihistamine for during the day. I'm awaiting results of skin biopsy.
As I said at the beginning, I am sorry for the length of this post but if any of this sounds familiar and you can give me some insight I would greatly appreciate it.
Becky