GCA conserns

You are experiencing the same symptoms I had before I was diagnosed with GCA.

Hello @aewin, Welcome to Connect. You are not alone when it comes to being concerned about GCA symptoms. In both my occurrences of PMR my primary care doctor and my rheumatologist had my keep a daily log of my symptoms and pain along with my dosage of prednisone. They were always asking me if I had pain in or around the temples or scalp and if I had any vision symptoms which could indicate that I also had GCA. I was fortunate that I did not have GCA. I think you are right to be concerned and to advocate for your health. I don't have any experience with GCA but we have other members like @tsc @novabill @pickle7 and others who have posted their experience and related information in the following discussion:
--- Think I have Giant Cell Arteritis (or GCA): https://connect.mayoclinic.org/discussion/think-i-have-gca/

You might also find the following discussions helpful:
--- PMR progressing to GCA? Broken vessels in eye: https://connect.mayoclinic.org/discussion/pmr-progressing-to-gca-broken-vessels-in-eye/
--- How often does PMR progress to GCA?: https://connect.mayoclinic.org/discussion/how-often-does-pmr-progress-to-gca/.

Are you able to seek a second opinion with another rheumatologist?

That is the answer what I was afraid of. Thank you, minijohn!

Thanks for your answer, John!
I could discuss with my local GP this afternoon and she understood my concerns and agreed to raise the dosage to 40mg until I could discuss with another rheumatologist.

Hi @aewin , the incidence of GCA is 1/3 that of PMR. They are companion inflammatory disoders. I had PMR symptoms, not diagnosed for a number of months, before I developed GCA. My jaw was okay, but I had short stabbing pains from my ear to my nose, a tender scalp, an itchy torso for a couple of weeks, sensitivity to the sun, a dry cough, loss of appetite and gagging attacks. Also, very high inflammatory markers in my blood, ESR and CRP tests just prior to diagnosis. I also had difficulty seeing out of my right eye a few times, fatigue from anemia, caused by the PMR/GCA, "The anemia of chronic inflammation."
I'm glad your doctor prescribed 40 mg of prednisone - that's the same dose I was put on because I'm small - 5 feet tall and about 93 pounds at the time. My GCA was confirmed by a temporal artery biopsy. Maybe your doctor can arrange this as soon as possible? It's best not to wait. If you are on a high dosage of prednisone for a while, you may not test positive. Maybe someone reading this can comment on that.
I was familiar with GCA because my mother in law had it. Her symptoms were different from mine. She had a constant headache, night sweats, fatigue and couldn't chew her food. The doctor she was referred to told her she had a virus,to go home, and tough it out for three months. She could have had a stroke or gone blind! A physician friend of mine assessed her symptoms and referred her to a better doctor who did the biopsy. She got GCA it in her mid 80s. lived to be nearly 100, and had a full life.
My rheumatologist also prescribed a low dose aspirin daily as people with GCA can develop aortic aneurysms down the road. And it's important to get a bone density test as well. Prednisone can weaken the bones.
Anyway, I think @johnbishop gave you good information.
PMR and GCA are scary, but with good treatment, they can be managed. I was able to get off prednisone a year ago, after taking it for more than a year and a half.
I wish you the best. And do keep advocating for yourself, as much as you need to, until you get the proper treatment.

I had a mild headache, with pressure behind my eyes, from the time my (extraordinarily severe) PMR symptoms started in Jan 2023. Initially this was the last of my worries given my extremely painful 24/7 PMR symptoms. I was diagnosed with PMR 3 weeks after the symptoms started. After 4 weeks of treatment with Prednisone at 20 mg, the headache became worse, my eyes muscles started to feel quite sore, and I then developed short episodes of double vision. At that point, I was pretty panicked, and added another 20 mg of Prednisone to what I had already taken that day, and went to the ER. After a 12-hour nightmare medieval experience in the ER, during which they imaged my head, I was told there were no signs of GCA, and I had not had a stroke. The additional Prednisone I had taken had made the headache, double vision, and eye soreness all disappear. The ER doctors prescribed 60 mg/day of Prednisone. This was now March 2023. The 60 mg/day Prednisone was very effective, but had serious side effects - especially in terms of insomnia. A month later, in April 2023, I began Actemra (tocilizumab) injections and tapering off the Prednisone. After 6 more months, in October 2023, I finally got off Prednisone. I've now been off Prednisone for 5 weeks, and continue weekly injection of Actemra. So far, no relapses, and minimal side effects from the Actemra. I'm 64 years old, male, have always been very physically active, 5'10.5", 140 lbs. DEFINITELY, DEFINITELY get educated and be prepared to advocate for yourself. The doctors work for you!

Thank-you for the update. I was wondering what was happening.

I know it is probably too soon to talk about discontinuing Actemra. I have been on Actemra for almost 4 years. Actemra was stopped once because of a lack of supply during a prolonged period of time when there was a problem with the supply chain. I didn't do well when Actemra was stopped. I wouldn't call it a relapse but I did go back on 10 mg of prednisone for a couple of months.

Now there doesn't seem to be any plan to stop Actemra. First my doctor would say we would discuss it at my next visit. Nothing happened at the next visit so I asked again at my recent visit. The answer was, "I could do an infusion every 5 weeks if I wanted to but I didn't need to." That wasn't exactly the answer I wanted to hear.

I'm currently doing an Actemra infusion every 4 weeks and all is well. I got off prednisone again in a couple of weeks when Actemra was restarted.

Thank you for the wishes and the very helpful replies from all of you!
I was able to make an appointment for the next monday to another rheumatologist.
What I heard she is very competent about the relation between the PMR/GCA .

I had those symptoms and have GCA. I would go to another rheumatologist. Someone knowledgeable about GCA.

Thanks. It is really good to be off Prednisone. But there seems to be no clear guidance in the medical literature about discontinuing Actmera. The doctors have little information to go on.

The main GCA/Actemra study in the New England J. Med had participants stopping after 12 months, and about 50% staying in remission, if I recall correctly. I may try for this schedule; for me it would mean staying on Actemra through the winter, until April.

If course, tapering down from 1 shot/week to longer periods is also an option.

While Actemra seems to have fairly minimal side effects, I'm limiting my exposure to the world due the consequences of infection, if contracted. This means no airplanes, no buses, no indoor restaurants, no indoor performances, no museum, etc. so it is pretty limiting for a 64 year that still wants to get out and enjoy life.