Update on worsening headaches and scalp tenderness

[Bummed24]

Ten days ago, I increased my Prednisone to 65 mg. for scalp tenderness, jaw claudication for 24 hours, and headaches.My scalp tenderness, and ear pain has now diminished by about 50%. The headaches sometimes pounding, may be 30% less, and I often run a temp of 100.6. I am exercising less, and resting more these days.My rheumatologist thought my symptoms should be better by now due to the Pred, and one dose of Actemra infusion two weeks ago. He ordered a head MRI which shows "Multifoci of T2 FLAIR hyper intensity of white matter." I will be seeing a neurologist tomorrow morning.

Might I just need more time to heal? I had classic symptoms of PMR initially which responded well to the Prednisone.

[PMRpro Ambassador]

The Actemra is very unlikely to have taken effect yet - my rheumy, a top expert in the field, feels it can take a couple of months and that is why it is used in parallel with high dose pred at first. Some rheumies are too impatient for results and overestimate the wonder-drug they think Actemra is.

"Multifoci of T2 FLAIR hyper intensity of white matter." is a fairly common finding in aging patients, Hope that is all it is.

[Bummed24 in reply to PMRpro]

That is so helpful to know about the Actemra. Thank you PMR pro. You are a godsend.In general, how would you suggest tapering when it's time...in light of lessened, but continued symptoms and hopefully, ongoing Actemra infusions. Is there a time frame for GCA symptoms to generally diminish?

I am looking forward to being on the " other side" in the future , encouraging others rather than asking all these questions. 😉

[PMRpro Ambassador in reply to Bummed24]

LemonZest11 is still in the process of tapering Actemra - she managed to get it approved for longer and has got to 1 injection every 4 weeks. You are on infusions and that may be much harder to taper in the same way. They haven't been approved for GCA but the insurance companies won't play ball in the USA.