Hello everyone,
I stumbled upon this forum desperately looking for information on Wegeners/GPA. I hope we can help each other out. I've been recently diagnosed with GPA, I guess in December 2016, although I have to say it has not been a firm diagnosis like through any type of biopsy.I am 53 years old and before this I was a very healthy and active person without any type of health problems. Avid tennis player and exercised 4 times a week. I live in Atlanta Georgia.

If I go back to when anything went weird, I have to say that all my problems really started last May 2016 when I was told I had pneumonia or a bad lung infection. I had been feeling bad like for a month, without energy and wanting to go to straight to bed after work. They x-rayed chest and found a mass in upper left lobe which they said it was inconclusive for pneumonia so I was treated with antibiotics twice (first didn't work) and sent me to lung Dr. Got better after 2nd antibiotic. Also did a series of CT scans to check on the mass and it gradually got smaller so the next one was supposed to be in 6 months (Feb 17).

Meanwhile, I went on with life. Started exercising again. Then in October I had a very painful episode of shoulder joint pain.. Ended up seeing a rheumatologist who started running blood tests. ANCA markers were there. Other symptoms started to show up fairly quickly. Severe joint inflammation,swelling and pain. Left eye was blood shot. My toes started getting numb and asleep/crampy. Then the numbness starting moving up my left foot and then right foot and then legs and now it's in my fingers, hands, arms, face, around my eyes. It also became painful with pressure and nerve pains. I also had bloody lesions in my legs which they biopsied later and came back as "leukocytoclastic vasculitis". I was told I had neuropathy in my feet. They put me on prednisone back in November, started me on lower dose (10mg) but due to symptoms and blood results, had to increase it gradually to 60mg daily where I am now.

Back in Dec they did another CT of lungs and the mass on the left lobe had closed up and left a scar but a new mass showed up on the right lung (lower to mid lobe). Ordered a biopsy but bc of holidays, it didn't get scheduled until January 2017. When they went to do it, a month had elapsed that I was on prednisone and the lung mass had disappeared the day of the biopsy, so they didn't have anything to biopsy. I was disappointed I didn't have that proof that what I have is really GPA. However, due to blood work and nerve issues, Rheumy said she was pretty sure and that the disease was moving pretty aggressively on me and that she really didn't need the biopsy, that she wanted me to get treated ASAP. So, all that happened between november 2016 and now.

Rheumy Dr recommended the Rituxin treatment over the citoxin. We got it approved (took like 3 weeks) and I started last week. Have only had one treatment and it made no difference so they could not lower the prednisone. On the contrary, Dr ordered pulse doses of steroids through IV to see if it was more effective controlling nerve pain than the the oral dose. Next Rituxin infusion is in 2 days. So, I guess the disease is attacking my lungs (although they are ok right now), nerves and kidneys (not too bad yet). she is calling it the mixed connective kind because my connective tissue is the worst symptom right now.
I am not going to lie,both my husband and I are very scared right now. Feel like so far this disease has been very debilitating so far. I've had to ask to work from home since the nerve pain is pretty bad. Taking Gabapentin and Tramadol to help with pain.

I am not feeling very positive right now since I thought that after first treatment of Rituxin, I would be able to go down on the prednisone and start feeling better. I feel a bit discouraged and scared.
This high dose of prednisone is really bad and it's not even controlling my symptoms that well anyway.
I am thinking I need to find a doctor that is a specialist in GPA. My rheumatologist has been great and she has been very caring and concerned with the progressive nature of this disease. however, I feel she doesn't have that much experience dealing with it.
Well, I think that's enough of an intro. Should do another post to ask about GPA specialists.
Thank you for the opportunity to introduce myself.
Looking forward to sharing.
Jeannette