Saw new rheumy today and he changed the Azathri0prine to Lefumomide. I was never happy with the Azathrioprine but does anyone know anything about Lefumomide. Also he put my steroids up to 30 mg as I have had bad flares after going down to 25mg as my old rheumy insisted on 5 mg per week which everyone said is too fast. I am to stay on 30 for 4 weeks which seems a blow having fought to get down to 25 and I have put on over a stone and am already overweight - but I felt I should go up as I have felt really awful. He didnt look at any of my scans including the PET SCAN used to diagnose me , nor my recent bone density scan. He just said carry on taking the ADCAL and aleondronic. He seemed to rely mostly on what I said to him. My bone scan said I have osteoprenia and that I have a young adult T-score of -1.9 and a 22.8% chance of fracture within 10 years - otherwise I am not sure what that means or if I need further treatment. Its all so confusing. He said he will write to Prof. Dasgupta about me having Tocilizumab although it is not yet licensed for GCA.
Well I guess I made some progress and at least I know what to do next. I have had so many problems getting anyone to answer my questions. My GP never returns my calls and getting blood results etc. is like getting blood out of stone - excuse the pun. Many thanks to all who help with their knowledge.