Hip pain, where do you feel it ?

Wow that’s been my pain areas since I dropped my pred to 3 mgs. My lower back, right hip and the areas surrounding the very top of my thighs where they join the hip. I did a 3.5 mile walk yesterday but had to sit down twice to calm the pains, which is not my normal. The pain in the areas surrounding my thigh areas don’t really hurt until I sit on floor & press the souls of my feet together doing stretches. Then I feel it. Also My psoas area on right front leg is always mad if I sit for more than 15 min. Anyway when on higher doses of pred these areas had quit hurting. My question is does one just accept the pain & keep the slow lowering of prednisone (I’ve been on it since march 2025) or do we up the pred dosage to stop the inflammation???
Is it better to have higher inflammation (SED number jumped to 28) & lower pred or is it better to up the pred to calm the inflammation?? What is better for our bodies? I know my rheumatologist wants me off the stuff by end of March ‘26 visit.
Any ideas, folks?

@kare1, those are excellent questions! It is likely all about your rheumatologist philosophy but mine has advised me that we go slower with Prednisone reduction when I have increased pain or elevated Sed rate or CRP. Those inflammatory markers were extremely high when I was diagnosed and they have been stubborn particularly when my pain was high. Sounds like you may still have disease present so going off of the prednisone prematurely may not be good for you especially at such a low dose. I would definitely have a fresh conversation with your rheumatologist. He might even consider prescribing a biologic to help support you.

@ronludington described my PMR pain perfectly. Bi-lateral hip pain that worsens when I walk or stand for long periods. I was diagnosed in March 2022 when I woke up one morning and literally couldn’t get out of bed without an assist from my hubby. My inflammatory markers were crazy high and the pain in my hips and low back were ridiculous. This has been a long slow dance for me but I am finally down to 8 mg of prednisone with weekly Actemra injections. I just couldn’t get the prednisone down without adding a biologic. So thankful that I finally decided to try it because I haven’t had any side effects. Almost 4 years on prednisone but I am hopeful that I will be completely off of it by late summer! Good luck to you! ❤️

I feel a lot of pain in my neck, my hip, weak legs, ankles swell, wrist hurts fingers etc. my PA treated me with steroids for one year. She started weaning me off after 6 months. I still have 8 weeks left, I am down to 3 mg, next week 2 and then 1 mg. I feel terrible.. I also have ongoing digestive issues and have for years. I have no appetite and have been losing weight, 15lbs to date. Im at my wits end trying to find a doctor who knows a lot about PMR….she is now telling me I don’t have it and never had it…so why treat me with prednisone for a whole year? I’m confused!

@sandiw77 I am on prednisone for almost for years too, and. Can’t get below 6 mg. And sometimes have a flare and have to go up. I’ll have to look into that biological too.

@gem3850
Hoping you can find a doctor that is able to help you!
I, too, am scheduled to be off prednisone in February if all goes well. I am on Kevzara so not sure if that is taking over the job that prednisone was doing but I have not felt any PMR pain since having treatment for PMR. Only fatigue when I am exerting myself which I’m sure is normal as the body is fighting inflammation. I am grateful that pain relief has been successful for me through this journey. Hoping you will find relief soon!

@caroljeand
Kevzara allowed me to get off Prednisone.
When I had/have a more active day (hike, bike, golf etc) I take a Tylenol for ARTHRITIS as a precaution. My Rehumy told me I could take it while on prednisone and it helped with the tapers.