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@maryannhaller

This group has helped me just that I'm not alone. My PMR started in spring of 2018 starting prednisone at 20mg. Was able to taper down to 2mg summer of 2019 but just when COVID hit us in Jan that year I had a spike that was so bad I went back up to 15mg. I have been struggling ever since and have been stuck at 10 1/2 now for 4 months. I'm thinking I should get tested for GCS. The pain is mostly in my neck, so bad! I do get weird headache but they come and go and not severe. No eye trouble. I just don't know what to do and my Rheumatologist is also stumped. I'm getting a second opinion Dec. 11 2022.

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Replies to "This group has helped me just that I'm not alone. My PMR started in spring of..."

@maryannhaller. By "GCS" do you mean GCA, Giant Cell Arteritis? Surely, with your symptoms, your rheumatologist should have tested you for that. The "golden" test for GCA is biopsy of your optic artery. Painless, with just local anesthetic, and virtually no visible scar at your hairline just in front of your ear. Perhaps your second opinion doc will perform that test. It's the only sure diagnosis for GCA. I have had weekly Actemra injections, a medication specifically developed for GCA, for over a year. A year before that, I was hospitalized for 3 days of I.V. Prednisone injections because the GCA had caused blindness in my right eye and this was to stop the blindness going to my left eye. That saved the vision in my left eye! I was on high doses of Prednisone for the following year and then my rheumatologist put me on Actemra. Much easier to take than Prednisone!
I hope you get some answers from your second opinion doctor.
Warmest wishes, Laurie

Hi @maryannhaller I had PMR for 9 -10 months, untreated, then got a horrible stiff neck, so bad I couldn't turn my head, my neck was so stiff, it would get stuck. I had to turn my whole body to look sideways. I also had severe pain on both sides of the back of my head, down the neck and short stabbing pains on the side of my head, ear to nose, that came and went. Twice I had difficulty seeing out of my right eye, but those incidents were short lived. Also, a dry non-productive cough, tender scalp, severe itchiness on my torso, loss of appetite and anemia. A couple of days before I had a temporal artery biopsy, the rheumatologist upped prednisone to 40 mg. The neck pain totally disappeared. The biopsy was positive, In six months, I've tapered to 7.5 mg prednisone with no flare ups. I hope my experience helps you. My mother-in-law had GCA and her symptoms were textbook, entirely different from mine. The consequences of untreated GCA can be severe so I hope you get some answers soon. All the best.