kelly anne
05-19-2013, 01:51 AM
Hi All,
I 48-yr-old female and was diagnosed in February after a lung biopsy and positive ANCA. It began around Oct-Nov with "clogged" ear and progressively less hearing in that ear and a bit in the other. Also I had a rash on my arm a few times that I did not realize at the time was related. Saw ENT who prescribed several different nasal steroids that had no effect. A steroid pack in early December to my delight opened my ears...but within a week or two they closed again. We discussed eardrum incision/tubes after the holidays, which I'm glad I did not end up getting done. In early January my husband got the flu and within a few days I had the same flu-like symptoms. However, he got better within days and I remained sick. For 3 weeks I ran a low grade fever, runny nose, major hearing loss in both ears, major night sweats, low energy, scalp felt soft to the touch, and strange bumps under the skin on scalp and forehead. Then I got a constant, horrific dry cough that produced some blood. By the last week of January the joint pain kicked in. First hips, then the bottom of my feet were very sore to walk on. Eventually ankles, knees, shoulders, and even jaw became sore with use. I felt terrible from head to toe. Assumption now is that I did get the flu, which kicked the disease that had been progressing slowly and mainly only in my ears, into full gear.
During this time I was prescribed 3 different antibiotics that had no effect. Finally my husband took me to ER where they ran a chest x-ray that showed a mass. That was shocking news. The follow up CT scan showed multiple masses. For a few days, while awaiting the lung biopsy and results, I was convinced I had lung cancer. But to my relief the biopsy showed granuloma, not cancer. Then an ANCA test confirmed Wegener's, which sucks but lung cancer would have sucked worse. And no kidney involvement. I felt and still feel to some extent lucky. (Not sure that feeling will stick around the longer I'm on prednisone!)
My first question is regarding pred tapering. I went from 60 2 wks, 40 4 wks, 30 4 wks, and virtually all symptoms were gone. Other than the pred side effects, I felt good. Then I tapered to 20 and within a few days pressure in head and ears began returning, slightly diminished hearing, sinuses acting up, and have minor chest congestion and cough. After 10 days on 20, Rheumy had me go up to 25, but after 8 days of that, no improvement and a bit worse each day. I have a message in to her now, and I'm sure she will have me go up again, but I am curious what others' experiences have been with relapsing when tapering as far as how much you had to go up to be able to reduce again.
Also, does anyone know the signs and symptoms associated with cardiac involvement? Do most patients seeing Weg/GPA experts have cardiac screening even if there are no specific patient complaints? My rheumy is not Weg/GPA expert per say...
Sorry for the lengthy post!
Kelly
I 48-yr-old female and was diagnosed in February after a lung biopsy and positive ANCA. It began around Oct-Nov with "clogged" ear and progressively less hearing in that ear and a bit in the other. Also I had a rash on my arm a few times that I did not realize at the time was related. Saw ENT who prescribed several different nasal steroids that had no effect. A steroid pack in early December to my delight opened my ears...but within a week or two they closed again. We discussed eardrum incision/tubes after the holidays, which I'm glad I did not end up getting done. In early January my husband got the flu and within a few days I had the same flu-like symptoms. However, he got better within days and I remained sick. For 3 weeks I ran a low grade fever, runny nose, major hearing loss in both ears, major night sweats, low energy, scalp felt soft to the touch, and strange bumps under the skin on scalp and forehead. Then I got a constant, horrific dry cough that produced some blood. By the last week of January the joint pain kicked in. First hips, then the bottom of my feet were very sore to walk on. Eventually ankles, knees, shoulders, and even jaw became sore with use. I felt terrible from head to toe. Assumption now is that I did get the flu, which kicked the disease that had been progressing slowly and mainly only in my ears, into full gear.
During this time I was prescribed 3 different antibiotics that had no effect. Finally my husband took me to ER where they ran a chest x-ray that showed a mass. That was shocking news. The follow up CT scan showed multiple masses. For a few days, while awaiting the lung biopsy and results, I was convinced I had lung cancer. But to my relief the biopsy showed granuloma, not cancer. Then an ANCA test confirmed Wegener's, which sucks but lung cancer would have sucked worse. And no kidney involvement. I felt and still feel to some extent lucky. (Not sure that feeling will stick around the longer I'm on prednisone!)
My first question is regarding pred tapering. I went from 60 2 wks, 40 4 wks, 30 4 wks, and virtually all symptoms were gone. Other than the pred side effects, I felt good. Then I tapered to 20 and within a few days pressure in head and ears began returning, slightly diminished hearing, sinuses acting up, and have minor chest congestion and cough. After 10 days on 20, Rheumy had me go up to 25, but after 8 days of that, no improvement and a bit worse each day. I have a message in to her now, and I'm sure she will have me go up again, but I am curious what others' experiences have been with relapsing when tapering as far as how much you had to go up to be able to reduce again.
Also, does anyone know the signs and symptoms associated with cardiac involvement? Do most patients seeing Weg/GPA experts have cardiac screening even if there are no specific patient complaints? My rheumy is not Weg/GPA expert per say...
Sorry for the lengthy post!
Kelly