Strange story: Watch for changes in your condition, keep an open mind

Certainly glad you finaly got your new hip. Now watch out for the Trochantor Bursitis that sometimes comes later. It can be very sneaky. I prefer to treat mine with cold packs then heat then cold again. Always end up with cold. Does take out the inflamation. And resting the joint. Seems to be very pesky. Best.

Good advice, @elizabethjoan and congrats on being pain free.

I'm linking back to your original discussion so people can follow your story
- Increasing unrelenting pain - PMR? https://connect.mayoclinic.org/discussion/increasing-unrelenting-pain/

Should you wish to connect with others who have had a hip replacement, check out this support group:
- Joint Replacements https://connect.mayoclinic.org/group/joint-replacements/

Interesting!!! I have had PMR for almost five years. On Actemra which has been a miracle drug for me, putting me into remission. About four months ago I developed hip pain that made it painful to walk. I thought it was my osteoarthritis, but my rheumatologist diagnosed it as Trochanter Bursitis. She gave me a steroid injection that removed the pain for six weeks. It is back but not as severe. The possible connection to PMR fascinates me.

I think the bursitis is more of a mechanical problem where as PMR is autoimmune. But we walk funny because we are in pain and that sets off all kind of problems. I'm glad the shot helped you but personally I think they can cause as many problems as they help. Steroids are a tricky medication.

Thank you for posting your story!
You are absolutely right about possibilities of other ailments that mimic PMR.
I was diagnosed in July and started on 60 mg prednisone also had a double biopsy for GCA.
As we started tapering down in September all pain was gone. Dr we're thinking I never had PMR
In October I found out my breast implants had ruptured. I had to wait 2 1/5 months for surgery
During this time I started to get horrible headaches, and my blood pressure raised to the point my Dr put me in the hospital & upped the prednisone thinking I had GCA.
Once the implants were removed headaches stopped!!
All you ladies with implants please read about Breast Implant Illness!
Bless you all

Ruptured breast implants ... now that is a strange turn of events!

I do fear there are many PMR cases that are misdiagnosed. The criteria for what constitutes PMR isn't exactly clear. I have read the criteria many, many times. In my opinion, the symptoms of PMR are basically the same for all autoimmune conditions.

My rheumatologist would refrain from telling me exactly what my problem was. She had to call it something so PMR was a justification for starting long term prednisone.

I had a long history of reactive arthritis with uveitis that was well documented before PMR was diagnosed. I took prednisone intermittently for 20 years to treat those conditions even though those conditions aren't treated with long term prednisone ... short term prednisone, yes as a bridge to something more effective.

When PMR was diagnosed, I asked a specific question about what happened to reactive arthritis. The response was that I was unlucky to have both PMR and inflammatory arthritis.

When I needed prednisone for much longer than the typical PMR patient, my rheumatologist started being more vague about my diagnosis. She started referring to "systemic inflammation" and "a full range of rheumatological problems" and avoided calling it just PMR.

"Deranged immune system" was another thing she called it!

"Deranged immune system"? Good Heavens, what's next?! You sound like a cantidate for Low Dose Naltrexone if ever I heard one. Please read about it and talk to your doctor.

Actually "deranged" is a fairly common way of describing medical abnormalities not just the immune system.
https://khn.org/news/article/covid-autoimmune-virus-rogue-antibodies-cytokine-storm-severe-disease/
It sounds better than the immune system becomes "unhinged" and other terminology.

My personal favorite was that things were "running amok" as in violently raging, wild, or uncontrolled manner.

I'm taking Actemra currently but Naltrexone has always intrigued me as something else to try.

I'm very open minded about these things. I used to tell my rheumatologist that prednisone can't be the only option. We tried many things until Actemra finally worked for me. If and when I ever need to stop taking Actemra, I will mention Naltrexone to my rheumatologist to see how she responds.

We had a great partnership and we kept our sense of humor. My rheumatologist couldn't stop laughing when I told her that my flares were more like voodoo. I had no idea what caused the pain. I was thinking someone had a voodoo doll with my name on it!

Your explanation makes as much sense as anything else! The problem I see with Actemra is it removes the IL6 that you have already made but doesn't do anything to lower what you are making. (That is my understanding. I could be wrong.) So unless your body stops making IL6 on its own, you are stuck with Actemra. I think LDN does help your body stop making it so I would go on it before you stop Actemra, to help the transistion. This is my understanding from my own reading.