I’m PGR/GCA since beginning of Jan 2018. On 40mg pred until 6weeks ago, was fired by my rheumy, then tapered to 37.5, to presently on 25. mg for 2 weeks. Tapering done under the direction of GP and new rheumy.
I still have the middle of the night waking with varying degrees of bathroom urgency, red face, swollen cheeks, jaws, (mirror horror story), worse tinnitus, some aches and pains, lying awake, etc. the insomnia has been somewhat better as doses lowered.
My question, does this middle of the night inflammatory dumping mean the disease is still active? Or just one of those things where everyone is different.
I’m still not sure about the new doc, as she does see me if I call with symptoms, is willing to schedule appts every 2 weeks, but very short office visits, last one not even 20 minutes?, and “if bloods are normal, reduce”. It seems like “the bum’s rush”. I need to type out a list of questions and hand it to her, maybe that will work.
Seeing eye doctor today so will post more after that.
Just feeling so discouraged, especially about losing more hair. It was an especially dear asset, (vanity!), before all this. Definitely worse in the last month or so.
Thanks for being here and understanding wonderful folks❤️