I have had autoimmune haemolytic anaemia as a complication of CLL for three years, with two relapses after a few months off steroids. I've been on prednisolone for more than 18 of the last 36 months and the AIHA is now starting to become steroid refractory, with a higher dose needed to get any control.
I have made known to my consultant my concern about long term steroids and their complications from the start. At the beginning of this year my GP raised the question of my needing a bisphosphonate to protect me from osteoporosis secondary to the steroids. At the time I was more worried about my weight gain an the risks of hypertension and type 2 diabetes and to my regret did not raise my GP's concerns with the haematologist.
After some back pain in August I did raise it and had a Dexa Scan arranged by my haematologist which showed that my hip had dropped into the osteoporotic range since a scan two years before. In October I had sudden,severe and continuing groin pain which MRI scan showed was due to insufficiency fractures secondary to osteoporosis. The concern now is the risk of further fractures occurring in my spine. I am now on a bisphosphonate (sodium alendronate)
My haematologist has now grasped the nettle and I am starting weekly rituximab x4 in the hope of getting a remission. The hope is that my need for steroids will reduce or stop.
My care is complicated with the AIHA managed by local consultant and CLL by haemato-oncologist (ibrutinib stopped after nearly three years in summer because of early peripheral neuropathy; bone marrow showed incomplete remission - down from 90% to less than 20% lymphocytes)
After my cautionary tale, please watch out If you are on long term steroids and do ask your consultant why you aren't on osteoporosis prevention if he/she hasn't flagged this up.