Buttock/tailbone pain, sitting or lying down - symptom of PMR?

I was totally unable to sit on the toilet because my toilet seat was too low to get my butt and hips down to it and I had to get a riser seat. Hip pain excrutiating. Down the back of my thighs. Unable to bend over to do simple things. Fortunately it did not migrate further down, e.g. my knees, calves and feet. 20 mg of Prednisone took care of that. It's been a trip. Didn't even know what was wrong from August 2021 to Jan. 2022, when I was finally diagnosed with PMR. A lot of pain for months without knowing what it was. Now trying to wean off the Prednisone which is a whole other challenge. It will level off eventually. So sorry you're going through the hip and tailbone pain. A disease which has similarities and differences for all of us. Take care.

Two days after my onset of debilitating pain, I ordered on Amazon a toilet seat lift with handles. It is carefully boxed up and in the attic, should I ever need it again. I am a year and a half out from my Dx. I got off steroids with considerable pain last August, I rushed it due to vision issues that terrified me. My only remaining symptom is some upper arm pain and the worst on bending is the posterior upper leg pain, hips, I hear it is tendonitis. I don't know what it is but I can not sit on any hard surface or bending over at the waist w/o pain and clicking of tendon/ligaments. My doctor says it just me, but I feel it is equal pain, bilateral and it has to be a part of PMR. I agree with the other posts, I meditate/pray and really try to manage stress, because that's how all of this expressed itself in the first place.

I'm not one of the experts here, but if you took yourself off of steroids, and you are in pain, you might be dealing with adrenal deficiency. That is something you need to look into. How much prednisone (?) were you on when you quit it?

One of the first symptoms of PMR for me was pain while sitting. By the time I was diagnosed I couldn't sit in or drive a car without extreme pain.
Prednisone and stretching/exercising have helped me.

Welcome @ralphs, During my first occurrence of PMR I was so happy the prednisone took away the pain that I didn't focus on too much else, especially the stretching and exercise. My second time around with PMR 6 years later I made some changes to lifestyle and diet which the exercise and stretching really helped.

Is your PMR still active? Are you still tapering down on prednisone?

Hi John,
Yes my PMR is still active and I am still tapering off prednisone. I also have found that exercise, diet (no junk foods) and stretching all have helped me. My doctor has been very supportive and has encouraged me through this ordeal.

Shoulder pain was my first issue, then my bottom! I could not get comfortable anywhere.
I am going to try the stretching. Thanks

Thank you, I started 20mg of prednisone on 9/29/20 and the last pill was taken 8/15/2021. My doctor approved, guided and checked the CRP and ESR monthly, I am getting better every month, however the pain in my hips does get me down. She thinks this is not part of PMR. Last blood draw CRP less than .4 and ESR 14. I keep hoping for a nutraceutical breakthrough.

Yes the hip and leg pain were excruciating. Thankfully Prednisone took this all away within a week. Then I started tapering from 20 to 15 and back pain started up. Now up to 16.5 for a few weeks. It's a roller coaster ride. Could I do it cold turkey? At one point I felt like I could, but know that slow taper is the best taper.

Hi, Sue. I wish you the best in your journey. But I would be questioning what the pain in your hips is if it isn't PMR. Have you had any x-rays or an MRI on your hips? Many people with PMR have normal blood readings the whole time. If you take some Tylenol, does the pain in your hips go away? If so, it probably isn't PMR. However if the prednisone helps it, it very well may be PMR. How much prednisone were you taking when you stopped it? And how long were you on that dose before you stopped?