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).
Hi Viola1, Brits are probably asleep as I should be. There are joys at 6 mgs too. An expert with GCA will need to advise you, I have PMR. It is possible to get some breakthrough symptoms whilst tapering. I think you are right in your assessment that this reduction was too far, too fast for you personally. You maybe someone for whom Prednisalone has a lower absorption rate. It took a top dose to get on top of your PMR - it maybe that you need more like 80 to get on top of GCA, then a very slow taper. This part will be hard as the high doses are a bit of a nightmare. Certainly discuss this with your Rheumatologist. It is important, as you know, to mop up all the inflammation before you reduce by a slow taper, for you I think. Let us know how you go.