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Is it PMR (and/) or Osteoarthritis?
My encounter with PMR began in November 2022, when suddenly I was beset with the pain and stiffness you are all familiar with. Even rolling over in bed required a fully-developed plan implemented with gritted teeth. Climbing the stairs was done on all fours. After a couple of weeks the diagnosis was made and a hefty dose of prednisone was started. This med was almost cartoonishly effective. Now I am on a taper like everybody else here!
Anyway, for months I have been bumping my way down the taper (presently a split dose of 6 and 3), with a pain level of 1 to 1.5 fairly consistent, and with a rare 2 or 2.5 usually associated with strenuous labor. However, ever since beginning the prednisone I have had no symptoms in my upper body; they are all located in the hip area. Furthermore, the symptoms are all located in the groin area, say, inboard of the hip flexors. OK, near my tackle. I have zero symptoms outside the groin area.
I know that osteoarthritis is lurking as it was identified in a hip x-ray taken when this all first hit, but the arthritis had been asymptomatic. But I am wondering now if in fact the PMR is being fully controlled by the steroid and all felt pain is actually associated with the arthritis. If so, perhaps I should stop hand-splitting firewood and speed up the taper.
Could you please weigh in on the following questions?
1. Do you have symptoms in your upper body/shoulders?
2. Precisely where are your middle-of-body symptoms located?
Many, many thanks!
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@mlz
I had a "bad right knee" before PMR was diagnosed, It was caused by a sports injury during my high school days. I had my first knee surgery in my teens and a second surgery on my right knee in my early 20's. Knee surgery done in the 1970's probably did more harm than good but surgical techniques have improved since then,
At the age of 25, I was told that I needed a knee replacement . Unfortunately, I had to wait until I was 60 years old to get a knee replacement. I lived with the right knee pain for 25 years until PMR was diagnosed at the age of 52.. I remember telling my rheumatologist that my "bad right knee" was "good" again except that I could not tolerate lower doses of prednisone.
It was probably 10 years into my PMR diagnoses when I had BOTH of my knees replaced. I told the orthopedic surgeon that I wanted my left knee replaced first because it hurt more than my right knee. I ended up having both knees replaced. My knee replacements were good for a 15 mg reduction in my prednisone dose.
I remember all the extra precautions that were taken during my knee replacements because of being on prednisone for 10 years. My knee replacement surgeries were done with an epidural so I was awake and could talk to anesthesiologist during surgery. I was fixated on the IV bag of hydrocortisone that was infusing.
Giving hydrocortisone through an IV for people on long term prednisone therapy replaces the cortisol your body normally makes during major stress like surgery. That bag of hydrocortisone was hanging for about 6 hours after each of my knee replacements. A nice endocrinologist who identified herself as part of the "medical management team" checked on me every hour after surgery. She disappeared after giving the nurses instructions to stop the hydrocortisone IV infusion but to make sure my usual daily dose of prednisone was given first.
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1 ReactionHi,
You have many good stories. I like this one especially for several reasons. First you documented what happens to early injuries in later life. Kids need to know that, especially concussions. Then your IV cortisone while in surgery. Would you allow that today? It seems that the potential problems caused by prednisone even at small dosages are only being recognized more recently. You're one of those who've taken prednisone such a long time, but I never hear you speak about side effects. And I'm only 2 days post-op and can't now remember what else I planned to say and I can't scroll to reread it. Maybe I better just quiet down.
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1 Reaction@mlz
I try not to dwell on the side effects of prednisone too much. When I do write about the side effects it is about "long term prednisone use" and not "short term prednisone use." The side effects from my long term prednisone use were a huge negative in my life. On the other hand, the pain relief that prednisone provided was a huge positive. When I weigh out the positives and negatives in those terms it makes me neutral.
I mostly wish to share my positive experience of being off prednisone for the last 5 years. The biologic I currently take has greatly enhanced my quality of life. The equation is different when I weigh the positives of pain relief + being on a biologic + being OFF prednisone. When there are 3 big positives with only a couple of small negatives ...the net result is hugely positive!
There needs to be alternatives to long term prednisone to treat PMR/GCA.
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1 Reaction@walkamok thanks for the great laugh. Ohhh, do I remember the days of trying to roll over in bed. I don't have tackle;-) but now ALL my pain is moved up to shoulders and nothing anymore around hips/lower body. Diagnosed early January 2026 and finally started pred mid March. Pain mostly gone away and comes back with a vengeance when I work out. Soooo, work out harder.