My name is Nick and I have recently, last month been diagnosed with GPA. I had been feeling rundown after a short flu bug in December 2017, then mid-January had some joint pain that lasted a few days which went away with some ibuprofen. The following week I had some discomfort breathing that was progressively getting worse over the week. I saw my GP at the end of the week who suggested possible lung inflammation from a virus and suggested ibuprofen. The following week the joint pains returned and were cycling round my body lasting a few days at a time. Return to GP who took bloods to look for rheumatism and more ibuprofen. Rash developed on my feet and blood from nose the next week. Back to GP and antibiotics prescribed. During all this I was losing appetite, not eating progressively drinking less and sleeping a lot. Also had sore gums, bleeding and mouth ulcers. Back to GP more blood tests called and antibiotics on 19 March. That night I started vomiting and other unpleasantness. Got to A&E and was advised I had 10% Kidney function left.
I spent 2.5 weeks as an inpatient with rapid diagnosis of GPA. I had 7 cycles of plasmferesis. Discharged 4 April but back again for a few days a week later with an infection. I am 2 cycles in to an estimated 6 to 10 cycles of cyclophosphamide. Currently tapering down on steroids at about 10mg per fortnight currently taking 50mg daily (Pred). I have fortunately recovered some kidney function and they are now about 25% functional so no dialysis required. Current medical view is that they will look to keep my immune system suppressed indefinitely with oral drugs following chemo due to high risk of flare up potential causing further kidney damage.
In general I feel pretty good. I am not experiencing any significant side affects of treatments, yet, but wonder if that is because it is still early in the treatment process. My current impression is that managing the suppressed immune system may be biggest challenge for now and welcome any advice or experience other members may have.