I was diagnosed with PMR in October 2018. Started on 25 mg Prednisolone. Stopped taking the medication in December 2020. In October 2021, I had a 3-week period with the worst headaches I could ever imagine. Nothing helped the pain. Naturally, I was afraid that I had GCA and went all of 4 times to the Emergency where, each time, I was told that I did not have it (I had none of the usual symptoms). I was diagnosed in the end with tension headache (and normally I do not get headaches). The bad headaches stopped in November.
Between Christmas 2021 and New Year 2022, I began to feel unwell (fever, tiredness) and was examined with ultrasound by a rheumatologist. Again, I was told that I did not have GCA. Nevertheless, the rheumatologist advised me to go to the Emergency again because my temperature had risen. There, they found that I had pneumonia and a UTI and I was admitted to hospital. After about a week, one of the doctors on duty, having read my journal, said he would like to bring in the rheumatologists again and I was taken to their department for another ultrasound exam. This time, GCA was detected. Because I had none of the usual symptoms, I was put on 15 mg Prednisolone. It made me feel better but my CRP began to rise so they upped the dose to 37.5. This was in February 2022.
Unfortunately, over the next year, my CRP continued to be too high (though it fluctuated). About a month ago I had a PET scan to see what was going on. It turns out that I still have GCA but mainly in my heart area and that I have developed a b-dissection (a small tear on my aorta). Seemingly this was also seen on a scan in December 2021 but no one ever mentioned it to me. At the time I was asked to see a cardiologist, which I did, and he found that all was well with my heart. The results of the latest PET scan were sent to the vascular specialists who did not think there was any danger since the tear has not changed in the two years that have passed since the it was first seen.
So, it seems that GCA is not just something that gives head symptoms but something that can be causing harm elsewhere in the body without symptoms other that raised CRP. I am now taking 40 mg Prednisolone and feeling really good. I shall be seeing another rheumatologist next week who intends to put me on a steriod-sparing drug (Roacterma) to reduce the amount of Prednisolone.