Hello everyone, my story is a long one I'm afraid so I'll be as brief as possible. I was diagnosed with GCA in December 2012 after a 15 week headache on the left side. Started on 60mgs of prednisolone and reduced fairly successfully to around 10mgs within a year after the introduction of methotrexate although I have felt absolutely dreadful throughout. ESR and CRP levels have been good throughout apart from once when I had a severe chest infection. Rheumatologist changed methotrexate to aizapriothene but still felt dreadful and unable to drop prednisolone without very painful side effects such as thoracic back pain, very sore breasts,muscle pain in arms and legs etc. Changed to micophenolate in March 2016. I had my last prednisolone tablet in October 2017. My experience with medication has not been good. Each additional drug over the 5 years has wrought havoc with my system, especially lack of sleep! I found steroid reduction difficult in that I was ok for a couple of weeks after each drop and then felt as if I'd been run over by a steam roller. This lasted for around 5 / 6 weeks then I felt better. I then kept repeating the process until I joined the zero club. The immediate clarity in my head and my ability to think again was wonderful. My body however has not been so good. Since October I have become increasingly decrepit. The pain and stiffness in arms, legs, back, neck and hands is awful and difficult to bear sometimes. ESR and CRP levels remain within acceptable limits so I'm told it's not a flare. I had a short synacthen test in January 2017 which I'm told was ok. Alendronic acid and calcichew were stopped in March 2016 and annual zolendronic acid infusion introduced. I have had 2 so far. One dexa scan in 2013 which showed osteoporosis with the lumbar spine T-2.7, hip T-1.9 (T-2.3 at neck of femur). Another infusion is planned for May. I've learnt an enormous amount from this group that I really, really wish I'd known about over the past 5 years. I suspect I was too fatigued (polite word for exhaustion) to research and even think about my options. I'm due to see rheumatologist again next week and any expert advice you have would be very much appreciated please. Additional meds are losartan and bisoprolol for bp and omeprazole. Thank you in advance.
Confused and need help please : Hello everyone, my... - PMRGCAuk
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