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My rheumatologist is a bit puzzled as to why I still have pmr pain but have normal inflammation markers after 6 months of prednisone. Both ESR and CRP were elevated on diagnosis (pmr confirmed by PET scan) but since starting prednisone they have been normal. I have gone from 20mg down to 8 now. Have tried methotrexate but did not tolerate it well. Specialist is now as
sending me for a second opinion on treatment. I also have been diagnosed with osteoporosis. I am 55 very active and healthy otherwise - pmr came out of the blue after the loss of 3 of my family members. So I have put it down to stress as being a trigger.
Have any other pmr sufferers had normal markers but still have pmr pain? I don’t want to go on a higher dose of prednisone as I also had side effects on the higher doses. Thanks.
Replies to "My rheumatologist is a bit puzzled as to why I still have pmr pain but have..."
I have had PMR now for 16 months. Healthy, highly active 83YO with no other illnesses or disabilities. Classic bilateral pain symptoms with elevated inflammation markers that quickly declined after starting 15mg Prednisolone and have remained normal ever since. Taper completed April 2023. However - over the entire period with Prednisolone and after ending my taper - bilateral pain (shoulders, arms, wrists, hands, hips) remained much the same. Worst in the early hours of morning. Alleviated by running and gym work. No signs of arthritis - my affliction seems to be entirely centred in the tendons with pain as the central manifestation. From my treating doctor’s point of view I am an atypical case for whom there is nothing much to be done. He has prescribed low dose Naltrexone (LDN) solely because I requested it as an experiment.
Hi, I’m very active 56 yo diagnosed w PMR Nov 2022. My labs were always normal so it was a few months before I got a the diagnosis- & yes, suffering all the while. I’m currently on methotrexate (get some nausea & headache) & 5mg prednisone. I was hoping to get off the prednisone but am not able to yet. Nice to read about other people’s experiences on here.
Yes, mine have been normal for two weeks after starting prednisone. I can feel the information coursing through my body. I started tapering in March. I got from 20mg to 12.5mg when my pain increased to 15! I’m back on 20 mg. I feel like crap! I was at 15 mg for a month and felt better than I do on 20mg so I’m tapering back to 15 starting today. 💕
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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.