On release from hospital, I had twice weekly visits to the hospital for blood tests and check-ups. There were various hiccups along the way due to drug intolerance, reactions and shingles, but I did 5 months on Cyclophosphamide. Over that time, I saw a gradual relaxation of my steroid dosage. This treatment allowed recovery of my kidneys to approx. 45-50% GKF, from a starting point of 7%. It was a very scary and a very fast-changing time, it all happened quickly and I struggled to understand what was happening to me. I knew I was in good hands and the staff at Aberdeen Royal Infirmary were compassionate and enduringly reassuring. When emergencies happened, I had superb and immediate access to clinicians, either at the weekly clinic or an invitation to come straight on to the ward.
I remember one of the clinicians reassuring me that when drugs or treatments didn’t work for me, there was always something else to try and they had a whole army of alternatives open to them. During that 5 months of treatment, I think it’s fair to say I felt pretty rubbish, quite a lot of nausea, terrible fatigue and a feeling that it would never end. But it did, and week by week I felt better and better, less nauseous, more energy, and overall much more myself, but it took 6 months.
From there I went on to a maintenance programme of low dose steroids and Azathioprine, which I have tolerated really well. I have been fortunate and suffered no ill effects of the treatment or maintenance drug and was able to return to work after 5 months. I now enjoy a full life. Just this year I started a steroid reduction programme with no ill effects. I’m just tapering my Azathioprine right now. So far so good, no ill effects.