I’m Karine, now aged 61 years and diagnosed with Vasculitis MPA 4 years ago. I was diagnosed after a 6-week period of feeling unwell characterised by weight loss, loss of appetite (very unusual for me!) raging thirst and horrible taste in my mouth. Before this I had been a fit and healthy 57-year-old with no other health problems
apart from a bit of arthritis. I had blood tests with my doctor one afternoon and was admitted to hospital the following morning with suspected kidney failure. My kidney biopsy the next day confirmed it was Vasculitis and I spent 10 days in hospital on huge doses of steroids, antibiotics and 7 days of plasma exchange. I also began a course of treatment with the chemo drug, Cyclophosphamide.
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 its 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.
I have been fortunate with access to clinicians at ARI, a centre for excellence in the treatment of Vasculitis, and the joint approach of clinicians and academics, all of whom continue to reassure and provide great care. The LCTF group has provided great support, camaraderie and good friends who each have a different story to tell.
Come along and join us!