@charlotte61
I just read your post and will share our experience. It is my husband who has GCA.

He developed PMR in May 2023. He had typical symptoms that were getting worse, to the point he could hardly lift the covers, brush his hair etc. By the time we finally got an appointment with our doctor we were 99.99999% sure he had it from researching his symptoms online (hindsight - if you have all the symptoms and suspect you have it, don't wait for an appointment. Go to urgent care or the ER. Hindsight is 20/20.)

At first our GP didn't believe he had it. We pressed the issue and he ordered labs for ESR and CRP, both elevated. ESR was at 50 (1-19 is normal) and CRP was 2.8 (< 0.8 is normal.) Our doctor diagnosed him with PMR and gave a referral for a rheumatologist. He also started him on Prednisone.

We had a hard time at first with dosing not working. He would feel good during the day and wake up with the symptoms again. We read info on here that some had tried middle-of-the-night dosing. We asked our doctor if we could try it. While at first reluctant he agreed. We started a small dose at 3 am (with some food) and the pain went away. Two weeks later we got in to see a rheumatologist and were soon after able to split the dose half with breakfast half with dinner and that worked. They started him at 20 mg and had to go up to 30 mg.

Over the months we tapered all the way down to 12.5 without return of symptoms and thought we had this beat.

We noticed something that might be helpful to others. His ESR levels were taken monthly (or close to it) and were as follows from May (2 in May) to October: 50, 36, 29, 19, 8, 11; CRP was 2.8, 2.8, < 0.3, < 0.3, < 0.3, < 0.3). THEN in November we saw ESR rise to 21, High again. CRP stayed the same. I was concerned with the rise in ESR but doctor didn't seem to be and continued tapering.

On February 12, 2024, when he began having new symptoms (terrible headaches, jaw pain, tender scalp, pain in temples, exhausted, loss of appetite and unintended weight loss, basically everything except vision loss which horrified me too) his ESR was 19 and his CRP was 5.3 High. Higher than it had ever been, which worried me. Things went downhill fast.

His symptoms worsened. His GP and rheumatologist did not believe me that he could have GCA. Why? I'll never know. I shared his symptoms, they knew he had PMR. It took a full week (which is like a year when you're worried your husband could go blind, have a stroke, die) if left unattended. Finally I convinced the rheumatologist to order a temporal biopsy. On the day of the biopsy (2/19) she finally raised his Prednisone dose but it didn't help.

Labs were taken again 2/23 - ESR 44 and CRP 6.9. He'd been taking Tylenol for repeated nighttime headaches (daytime headaches left when she raised the Prednisone on the 19th) but came back all through the night. I had to practically scream for them to listen to me. I created a chart showing what times of night headaches were happening for a week (kept a log), how much Tylenol he was taking, when he was taking Prednisone (which did not take him through the night and she would not allow us to split the dose.) She said if he got another headache in the middle of the night not to take Tylenol. I said we'd end up in the ER and the nurse was fine with that, said we'd get a faster MRI. Woke up at 2:30 am with a horrible headache and headed to the ER. In the middle of the night we received the lab results with those raised levels 44 and 6.9. That night they took blood and he was at ESR 81 and CRP 8.2. Freaky!! The ER doctor didn't feel he was being treated property and ordered three days of 1200 mg IV infusions of methylprednisolone. That took the headaches away.

His rheumatologist then put him on 80 mg prednisone daily after ending IV infusions, ordering us to take it once a day. Of course, his headaches returned but this time instead of 1:30 am to 2:30 am, they were at 6 am. So he had to suffer until his dose of Prednisone kicked in late morning. In order to make it to 6 am he had to take the prednisone at 10:30 am. It was a nightmare. We kept calling asking to split the dose. Over and over she was adamant we could not split the dose.

He suffered like this for a week. I called the rheumatology department telling them I wanted a second opinion. A nurse listened attentively to all of my concerns for 30 minutes and said she could discuss his case with another doctor and would get back to me.

She did. The Chief of Rheumatology reviewed his case and said he should not be dosing one time per day with 80 mg, it was too much, and he should split the dose. We've been doing that for almost a week with no headaches and his appetite and energy are back. He's shaky from the Prednisone but otherwise a whole lot better than he was.

We have an appointment later this month with the Chief of Rheumatology and she is likely going to be our new doctor. We've been told his case is extreme and not reacting to treatment like most. We've been prescribed Actemra and have it sitting in the fridge. His regular rheumatologist said to hold off until we get results of the CAT scans to be sure there isn't something else going on.

Sorry for the book but maybe something in here can help you. One thing I would recommend. If you develop the symptoms I described and that you can find online, do not let anyone tell you you have TMJ and stress headaches. That's what he was actually officially diagnosed with until the biopsy came back positive. No apologies from anyone. Fight for yourself and if worse comes to worse just go to the ER, tell them you have PMR and that you have these new symptoms consistent with GCA. Prompt treatment from everything I have read is imperative.