After six weeks lonely wait (apart from this forum) on 40mg Pred and no information, no real discussion with the Reg who saw me in A&E, I was in Rheumatology yesterday. Still no consultant. Anyway, the nice young man, a Reg, did listen and didn't talk at me. He felt I was very young at 54 and unexciting inflammatory markers made it less likely GCA but my rapid good response to Pred and my symptoms made it compelling enough to keep on with normal Pred reduction. I whipped out the guidelines to save his breath. I said I'd had a bumpy ride with my Pred taking and now take enteric coated at night. He said he'd not heard of them being like sleeping tablets which I find very surprising and he said he'd not heard of anyone manage to lose weight on Pred. I assured him it was taking massive self control and carbs/salt lock down. He seemed relieved when I said my face had changed though. Perhaps it was looking like I wasn't absorbing any Pred!
The DEXA scan came up as osteopaenic but I told him I'd already run figures through the FRAX tool that wasn't working on his computer and that I was still in the green zone for no Bisphosphnates. So, he agreed on supplements. PET scan ok but I asked if inflammation in the body would have been suppressed by the Pred after three weeks and he said it might, so not totally reassured. TA biopsy negative.
So now I'm scared stiff about reducing. I'm still aware that my left temple doesn't feel normal if it prod it but it doesn't hurt. Occasionally i get a sensation like a tiny bubble going pop painlessly there. Eyes and scalp are fine. I asked what he considered to be a flare and he said if I had the same symptoms as before give the Dept a call. I thought, nope mate, I'll be popping extra pills and going to A&E rather than wait days for someone to get back to me. I asked if my temple not feeling normal was par for the course and he said normally people get no symptoms after Pred starts but sometimes they can. Hmm.
No follow-up, into the care of my GP and the wild blue yonder. 😮