My inflammation markers (ESD and CRP) are both low normal (EDD = 4 mm/hr and CRP < 4 mg/L) but I still feel pain around my shoulders and arms. It is far, far less than before treatment, and now typically 1-2/10, but is still can be as high as 4/40.
I was diagnosed with PMR and possible GCA on Feb 2, 2023, and am currently on 50 mg/day of prednisone and weekly injections of Actemra. I was on 60 mg/day of Prednisone until a few days ago, but with weekly Actemra injections, I am now quickly tapering off Prednisone, following a schedule similar to the Actemra trials for treating GCA published in the New England J of Medicine.
https://www.nejm.org/doi/full/10.1056/nejmoa1613849
I am 64 and was in excellent shape if a little thin - 12% body fat, BMI= 19.7, 50 bpm resting heart rate with regular aerobic work, 3x/week kettlebell weight sessions, including Russian get-ups with 35 lb bell - before the sudden appearance of this disease.
The initial pain was suicidally overwhelming; it felt like I had multiple broken bones 24/7 for the 3 weeks until I was diagnosed and treated. In addition to the pain before treatment, I had severe nausea and lost 8 lbs, fever, heavy night sweats, a general feeling of acute illness and infection similar to a severe flu, a feeling of headache and pressure behind my eyes in my forehead, and experienced double vision necessitating an ER visit to confirm I did not have a stroke (this happened after treatment with 20 mg/day of Prednisone, which turned out not to be enough). But overall, my response to Prednisone was very quick, and it was literally a life-saver.
My initial inflammation markers before treatment were extraordinarily high: CRP= 347 mg/L and ESD just under 100. I have read that younger, healthier victims sometimes have more severe attacks. Perhaps it is due to the relative strength of our immune systems, which finds it has more resources than older victims to attack the body.
Thanks for your response. You’ve been through a lot!!
My levels were never as high as yours - And yes the pain is not what it was initially but there is still pain which I know is pmr related. I just don’t understand why that isn’t reflected in the blood inflammation markers.