PMR and Hip, Back Pain

Hello @johnarbaugh, Welcome to Connect. The first time I had PMR in early December 2007 and wanted to wait until the first of the year before going to a rheumatologist I had shoulder and arm pain which quickly moved down to the lower back and hips and leg joints. By the time I had my appointment I couldn't walk without help with terrible pain. After being diagnosed in the morning and picking up the prednisone at the Mayo Clinic pharmacy, we went to lunch and I took my first 20mg dose of prednisone. I had a follow up with the rheumatologist later in the afternoon and was able to walk relatively pain free. Mine was a constant pain until I started the prednisone.

I did find some information that may be similar to what you are describing as your symptoms.

-- [Low back pain and MRI-abnormalities: atypical polymyalgia rheumatica]:
https://pubmed.ncbi.nlm.nih.gov/21262024/
"Can PMR cause hip bursitis?
The main types of inflammation associated with PMR include: Bursitis. PMR often causes bursitis in the shoulder, hip, and neck joints. Bursitis is the inflammation of a bursa.":
-- What Is Polymyalgia Rheumatica?:
https://www.arthritis-health.com/types/polymyalgia-rheumatica/what-polymyalgia-rheumatica
Have you been seen by a rheumatologist who specializes in PMR?

Thank you John.
Yes, I’ve had a rheumatologist from the beginning.

I would be very inclined to think that your back/hip pain is related to the PMR. Over the years I've had PMR I've never had flare up pain that showed up in the exact same location. Why does the inflammation move around like that? I don't have a clue but in my experience if I start experiencing unusual pain associated with muscles or near joints I tend to look at my prednisone dose first. Each person is different but prednisone reductions of every 3-4 weeks never worked on me. I might not have a flare up immediately but the inflammation would build up and the pain would greet me once again, usually at a new location. A couple months ago I had gotten down to 3.5 mg of prednisone but started to experience pain in my neck muscles and one shoulder. After a few weeks I finally bit the bullet and jacked the dose up to 10 mg for a five days. That cleared out the inflammation/pain and then I brought my dose back down to 4.5 mg over a couple weeks. The 3.5 dose was likely just a little too low to be effective but it took time for the inflammation to build up to the point of being miserable again. Thankfully I have a rheumy who agrees that I understand how to handle my prednisone and lets me adjust the dose as needed. It's not for everyone, but I use a very slow reduction schedule that has worked for me for the most part. However, it's a constant search for the lowest EFFECTIVE prednisone dose, not a relentless reduction to zero. Here's the link for the "Dead Slow and Nearly Stop" reduction schedule I use, from the Health Unlocked website for anyone that's interested:
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

Hi @johnarbaugh, you described my PMR hip pain almost exactly. My PMR pain was first concentrated in my hips but before I was diagnosed I had pain in both shoulders too. I have found muscle relaxers to be helpful as well as some occasional Tramadol, if I overdo, but Prednisone has been the primary relief. If your morning pain (before Prednisone) is higher than 2-3, that may be your indicator that your body is requiring more prednisone to cope. Unfortunately, I have had to go up on my dosage with direction from my rheumatologist and have learned that a slow taper is wise and may prevent some of those backwards steps. Good luck, I hope it gets a little easier to distinguish the pain. Blessings!

Thank you. I’ve done a slow taper too. Down to zero, because I hate taking prednisone and I hate having PMR. It really has messed up my life. Anyway it all came back in 2 months.

Thank you. Yesterday I claimed that my shoulder pain was pretty much gone. Well….. I drank red wine last night and had another shoulder flare up at 1am. Still have it. How would you describe your shoulder pain? Mine feels like I’m being roasted from the inside. It’s not hot but feels hot. It also feels like my shoulders are vibrating or bubbling. It’s not, that’s what it feels like. It’s so weird. I tried explaining that to my rheumatologist. He said he didn’t know what I was taking about. And he’s had PMR. Does anyone else feel like that?

I am wondering if your ‘vibrating’ is actually a spasm? Spasms can actually be a very active part of PMR and the red wine may have set you off. My spasms usually start in my upper back , neck and across my shoulders. I would definitely try some heat and take it very slow for a few days but you still might need to talk with your rheumatologist about increasing your dosage for a while. Prayers headed your way!

Slow down your tapering quite a lot. You are not in a race.

This question is for John Bishop, our mentor: John, in a previous post, you mentioned a problem with stability in your legs at first with PMR. Could you describe it to me, please? I would like to see if it is similar to what I am experiencing.

Hi Sue @suetex, I think the stability in my legs was more pain related. I did a stupid man thing the first time I had PMR and the pain started with some swelling and pain in my right knee along with some minor aches and pain in my shoulders. It was in the Fall and I didn't want to go to the doctor until after the first of the year because of insurance and deductibles. I just kept putting it off until finally in January I called my primary care doc and she setup an appointment with a rheumatologist at Rochester Mayo. The pain was so bad in my legs that I could barely walk. My wife drove me to the appointment and I used a wheel chair. I had a meeting in the morning with the rheumatologist where he diagnosed PMR but also sent me off to have some fluid drained from my knee and sent me to the pharmacy to get an Rx of prednisone. Then he wanted me to take 20 mg at lunch and come back and see him at 2:30 for a follow up appointment. We picked up the prescription, had lunch and I took my first dose. By the time I had my appointment in the afternoon, I was able to walk and had almost no pain.