Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Hi @kmn1957, your symptoms sound suspicious to me.
I had PMR before GCA and the lower dosage of PMR I was initially given got rid of my PMR pain, but I still had intermittent head pains, and a scalp tender to the touch.
With GCA, I had many symptoms that were not constant, but came and went. My symptoms weren't "textbook" by any means.
I've had GCA twice now and my symptoms were different both times. My mother in law had it as well and her symptoms were different from mine.
The Rheumatologist ordered a biopsy of the temporal artery, which was positive. It wasn't a difficult procedure to go through.
GCA is nothing to mess with - you could go blind without much warning. If you have any visual disturbance, go to an Emergency Room immediately.
Best to advise your doctor of your symptoms immediately, and as @jeff97 suggests, see a Rheumatologist asap.
Good luck!

I'm in the 60 mg prednisone. But not sleeping maybe 2 hours at night ,
total. Ì have read that the biopsy could miss it too. Just because it's
negative doesn't mean you don't have it, right? I don't seem to have the
typical symptoms. Mauve i caught it before it got too inflamed? I will see
my headache doctor in an hour. Maybe she will know what to do. I only
have 2 more days of the prednisone so either someone had to fill it or
decide no. My primary has been too busy to get to see. So it's always
been a doctor on call.

Wow, 60 mg is a high dose, but not for GCA. And you're supposed to taper gradually off prednisone, not quit cold turkey.
On my first 40 mg I couldn't sleep much, but this time round I had no problem sleeping.
I hope you can get to the bottom of this and find out what's wrong.

Like @tsc says, if they don't renew your prednisone prescription, make sure and ask if you need to taper off of it. It can be dangerous to stop taking it or cutting back too much, depending on your dose and how long you've been taking it.

I had bad insomnia too as long the dose was about 40 mg or higher. But I was sleeping about 5 hours a night. My sleep really improved once I got below 40.

My biopsy came back negative but report says cannot be ruled out. Since I am still having symptoms I am being sent to rheumatologist. Prednisone has been lowered to 20 mg daily. Still waiting for a call with my appointment day/time.

@jeff97 Thank you, Jeff. The information you've provided is very much appreciated as it has effectively put an end to my searches on several subjects.

I was diagnosed with GCA from symptoms in April—awful headache constantly for nearly three weeks across my temples/ forehead, then jaw issues that panicked me. Felt as though my teeth were shifting position and jaw joint discomfort. Aware of seriousness, and of the false negative or positive potentials of a biopsy, we opted for a color ultrasound, which was inconclusive, but began prednisone immediately at 60mg. My pain disappeared literally overnight after one dose. I’m ending my 8th month now and really want off it because of the side effects, so, with my PCP’s advice, am tapering my dose. My goal is remission without relapse, which means very slowly. I’m down to 9 mg and the headache isn’t back yet. Finally saw a rheumatologist last week and we talked about going to tocilizumab to get off the steroid sooner, but I’m thinking it over in view of my age (80), the methods of administering the med, the cost, and the fact that I have diverticulosis and a higher risk of bowel perforation, which really scares me. Still thinking this over. I’d appreciate it if anyone with good or bad experiences on Actemra could share their opinions, as the drug’s warnings are truly dire. Like I could die during my first infusion, even if my insurance (Medicare Advantage Plan) would cover it! Thanks, all. S

I've been on Actemra
for almost 3 years with no ill effects at all. And my mantra is: anything but prednisone!

@brightwood I started on 60 mg of Prednisone in July 2024 for GCA/PMR. While I was tapering, I got down to 9-10, I had a flare (Dec. 2024). I started on Actemra infusions in January 2025. I was able to taper to 0 in November 2025, with no issues. I felt so much better after a couple of months on Actemra. The only side effects so far, is that it lowered my WBC and I easily get respiratory illness (although I mask up in crowded situations). I don't have any pre-existing conditions as you do. I went the infusion route, as my Part D doesn't cover Actemra self-injecting dosing.

@ropnrose thank you very much. And have a happy and pain-free new year.