Sharing good news. I saw my Rheumy this morning and I’m feeling so grateful to have her care and support. I have PMR/GCA/LVV and things started to flare in July. Since then my Rheumy has seen me face-to-face three times and phoned me twice to update me on many test results. To cut a long story short, I am now pain free, I have full mobility, my liver function is back to normal, my ESR and CRP are back to normal, a thyroid nodule revealed on my PET-CT scan is confirmed non-cancerous, and I am to stay on 5mg Pred for two months before even thinking about dropping. She told me that IF we drop from 5mg it should only be by 0.5mg every 2 months, but that she would not be worried if I had to stay at 5mg if that was what I needed. In addition, she is not pushing bone meds but at my request is arranging a DEXA scan as I haven’t had one for three years, and she’s even got me an appointment with an endocrinologist next week with the aim of resolving my ongoing hot flushes and night sweats (I think menopausal). To top the lot, she always welcomes me with a hug and leaves me with a cheery smile, telling me not to hesitate calling her if I ever have any problems.
All in all, I’ve had a very positive appointment this morning 😊 When the NHS works it is amazing.
Written by
JanetRosslyn
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If you can get in with a REALLY good rheumy, it is surprising how far is worth travelling! One lady in Kent was so scunnered with her local rheumy, he sent her to Prof Dasgupta and HE got it wrong too, she wrote to Prof Mackie in Leeds and travelled to her. SHE worked out it wasn't PMR - it was ankylosing spondylitis and arranged the correct treatment.
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