How about knee and lower leg pain?

I am not sure about your symptoms. I am assuming all the PMR markers tested in blood work. Takes more than a CBC. Most of us started with some localized pain like a shoulder, hip, knee but it quickly moves bi-lateral and doesnt seem to stick to a particular area. More like being hit by a truck. If it is PMR, my guess you would not have been able to make it without prednisone or some drastic measures. Ibuprofen does not seem to be very effective at any dose. Once PMR has subsided I think some feel pains in odd places. Particularly as they taper off steroids. Knees and lower legs are definitely sore spots for most. I could not get in and out of a chair.

"I could not get in and out of a chair."

I remember when I had to get out of the chair so I carefully lowered myself to the ground next to the chair. That was a bad idea because I couldn't get myself up off the ground and back into the chair.

I had knee pain before prednisone (along with shoulders, hips and thumbs). My rheum told me the knees and thumbs were not PMR, however, the pain was bilateral and resolved with prednisone 😀

Yes, the PMMR markers were tested several times. Ibuprofen, being an anti-inflammatory, helped just enough at high doses that I was able to survive, though I admit that sometimes I didn't want to. Thanks for your reply.

Thank you for your comments I am down to 2mg and experiencing very painful knees difficult to kneel but hoping that this gradually improves I work full time and manage about 5000 steps a day but do feel my knees complaining !

Yes your in a very critical spot. I hope you can hold course. It does get better but it doesnt happen over night. After prednisone can take several months. Even then one of the other threads was talking about life not being the same. It has not been for me either. Fortunately for me i was able to get off in 6 months. I have slowly been able to reverse the BP, cholesterol, and A1C.

Yes to everything. My Rheumatologist told me I was in remission 6 months ago but I have been in pain and still am. I have just about come to the end of the road with this illness. I don't suppose I have much more time to go with my life and I don't intend wasting it dealing with doctors and pain. I thought I was through with this but I don't think I ever will be. Be careful with painkillers they can contribute to cognitive decline. I don't take any now

Right now I have pain and weakness in the muscles around my knees, thighs, and ankles. My feet feel like they are bruised. I feel fairly sure that the problem aren't my knees as one joint was replaced some time ago and that one hurts just as much as the other. Also my hands and wrists are painful and weak. Phys Therapy didn't do anything permanent to help any of this no matter how good I was doing the exercises. I don't suppose doctors know as much about auto immune illness as they need to know to be really effective. But they seem to be trying hard to correct this. I am trying to set up my life to handle this in the future. My husband is working to help me do this, as he has problems of his own. When I met him 15 years ago, would you believe it, on Match.com, I knew he was a keeper and this illness has shown I was right.

I’m experiencing some of that as well. I’ve been off prednisone for 4 months. Right now I’m still experiencing some pain in my knees and for the first time in my calves. The knee pain is normal pain but the calf thing is more like over-exertion. They feel like I just returned from a 10 mile hike. Based on my experience I’m just going to power through it.

Me too. At times it seems like part of the departure process is having the disease have a last fling around the body! A shoulder here, knees suddenly start up, muscle down the outer part of the calves feels like I’ve done a marathon. No logic to it. Can be active or could have had a rainy day in just sitting. I’m just going to keep working through it too. Not much choice really 🙂

It is my understanding that not everyone with PMR has elevated inflammatory numbers. Have you seen a Rheumy to eliminate other possible autoimmune issues?
Once I was more or less pain free, my knees hurt enough I went to an ortho and discovered I have osteo arthritis. I now receive hyaluronic acid injections twice a year for these. I also have a torn meniscus in my right knee and need surgery, which is scheduled for the fall.
Lesson learned - the pain may not be a PMR pain, so pursue it to eliminate other causes. Please don't take OTC or Rx pain meds without at least working to find root cause. Pain meds are not solutions, they are work arounds.