I'm pretty new to all of this and understand it's different for each person and even different every day. Symptoms of PMR 3/18 , diagnosed 4/18 (needed 25 mg prednisone to get symptom relief), and diagnosed GCA 6/18 by symptoms only - left-sided intense headache, jaw tension/pain, temporal pressure/pain, pain behind eye, pains at base/back of my skull/neck. I took 60 mg prednisone then for two weeks and started reducing (too fast?) only to flare 3 weeks ago at 45 mg. Now back at 60, but have added 5 mg 3 different times in the last 1 1/2 weeks. Since 6/18 I have not been GCA symptom-free until a few days last week. However, last week I started to experience scalp tenderness, and have that most days now, along with transitory jaw, temporal, and base/back of skull/neck pressure/mild pain. Symptoms are not severe now and I've had no visual symptoms.
Why am I getting this new symptom of scalp tenderness and should I raise the prednisone until the scalp tenderness goes away? I have a good relationship with my rheumatologist (mostly by email) but I think she's mainly interested in the taper while I would like to be symptom-free through the taper if at all possible.
60 mg of prednisone is pretty tough -- 3 weeks now -- I'm revved up and fatigued at the same time; not sleeping enough; but my mood is ok.
Thanks for any input. I treasure the expertise and resources on this site and have been reading everything I can find to understand this strange illness better.
BTW I diagnosed myself with PMR because my 90 year old Dad has it and I help oversee his medical care. He's at 2.5 mg every other day. Yes, we're northern European (Dutch).