PMR with normal labs and having severe thigh pain

I am hoping that mine is muscular and persisting with my daily exercises. Am now on 4 mg and morning pains in thighs and shoulders are back, but I am hoping that if they are PMR they will lessen as my own body kicks in with cortisol. If not, I will increase to 4.5. Wishing us all luck.

The thigh pain is the worst! In the morning, it’s difficult to get out of bed and walk straight for about an hour. Then I seem to be okay until around 4 pm, and it starts all over again.

I have the same issues with the shoulders . Things were fair at 20 mg but got worse when I recently tapered to 15 mg prednisone. I’m going to try and ride it out a few weeks and see how it goes .
Originally almost all my pain were thigh and girdle region but that seems to be ok now. At least I can get around.
Did you recently start a taper?

Has anyone's Internist recommended cannabinoids and withdrawing Prednisone?

I wasn’t on prednisone since last September, thinking that the thigh pain was from spinal stenosis ( as three neurosurgeons told me). I decided to go back to a rheumatologist three weeks ago because I suspected that this pain could be PMR, and she prescribed 20 mg. I just cut it down to 10 because of the severe side effects. I will call the rheumatologist to let her know. The prednisone did help though, so it was good proof for me that I can live without spinal surgery!

My dose was not as high as some, started at 15 in January, symptoms started in Dec but super bad in Jan. Was on 15 for several months before tapering. Now at 4.

I was diagnosed with PMR 15 months ago. My first symptom, that took me to the doctors, was I froze when I got out of bed. I couldn't move and stayed there for more than 30 mins with my husband holding on to me. At my doctors I was diagnosed with PMR and consequent blood tests proved this was correct. Now under the care of a rheumatologist and taking Prednisalone I am still suffering (albeit there are some good days) my major problem is my thighs and pelvic area. Neck sometimes but thighs they feel like concrete. I am now tapering slowly and down to 4 mg. I wish you well on your journey.

After almost a year, I recently dropped down from 4 mg prednisone to 3.5 mg, as I learned the lower we go the more difficult it is and, therefore, I decided to do it in baby steps. Even with only a .5 mg. drop, I went into a full flare. Had recent visit to rheumatologist, who told me the rule of thumb is the bounce back to twice the mg. of what felt okay. So, here I am back at 8 mg, and yet still no relief. Just got my CRP and SED rate bloodwork done and all normal. Has anyone experienced normal bloodwork and still be in a PMR flare?
Thank you in advance for any responses relative to this frustrating PMR!!

A prednisone flare and a PMR flare are almost identical in pain. I generally think most everyone has a prednisone flare when getting below about 7mg and particularly below 5mg. Its true it may restart PMR thats why they start you on MTX or some other anti inflammatory. Some do not have elevated markers with PMR. At least not elevated outside of normal. However unless you had a baseline test before PMR who knows what your normal might be. My thought its a prednisone flare from lack of cortisol. Or adrenal insufficiency. You can experiment with your dosage if you go back up. Go up then try to get back to 3.5 in the first week. Then the only solution is to taper very slow. Try to restart your adrenal system.

Thank you for your prompt response. I will take your advice and experiment with dosage. It's so frustrating - while at the same time painful.. Truly stops me in my tracks... No one has ever addressed adrenal insufficiency with me, but it certainly makes sense. Just wondering how long it take (on average) to regain the lost cortisol from the prednisone. Suppose everyone is different.