PMR relapse symptoms

@allinge I had the same thing happen to mean when I weaned down prednisone. The migraines were daily and awful. I did not want to go up on prednisone so kept going down in dosage. I treated the migraines like I was a migraine patient separate from PMR and prednisone symptoms . The migraines als persisted after I completed prednisone. Eventually I went to see a Neurologist who is treating my migraines. I have not had any for several months.

I am 62 and was newly diagnosed in Dec of 2025 with PMR after 3 months of tests and scans so started 60mg prednisone daily on Dec 26th 2025. (After GCA was ruled out they took my dosage down to 40mg daily.) Still waiting for my first appointment with Rheumatology in April. Unfortunately this past Monday I missed my 40mg daily dose and didn't realize it until my shoulders started hurting, then my neck, then my hip area. That was around 3 or 4pm. I normally take my dose at 6am. I wasn't sure if I was to take immediately or wait until 6am the next morning so I stuck it out until the next morning with increasing pain and finally limited ability to walk. I am stunned if missing 1 dose caused me to deteriorate so quickly in less than 12 hours. Is that normal? I called my neurologist to ask this question since she is caring for me until I can get in with Rheumatology, but waiting for a call back. Her nurse said this major flare is expected given the dosage that I'm on, but I'm blown away that I was practically immobilized without my 40mg dose!!! If anyone has experienced this or has thoughts, please share. My Rheumatology appointment is not until mid April. I have so many questions and concerns!

@allinge I understand that frustration which must have been exacerbated by the suggestion that Tylenol was the answer - when it wasn’t. “This was different” is the key. PMR pain is specific and different from a regular headache, stiff shoulder, creaky hip, or sore joints from other causes where Tylenol can help. It is difficult to articulate to anyone who has not experienced it, including the medical professionals tasked with helping us. My hope is your doctor is disappointed in the situation since prednisone tapering is so challenging and you’ve been forced back up the ladder, rather than disappointed over grabbing prednisone as a life ring to control PMR pain. I don’t believe anyone with PMR who understands the double-edged extremes of prednisone takes self-care dosage increases lightly. Try to push the frustration aside as much as you can and channel that energy into your recovery from this relapse. You’ve tapered before and can do it again. Best wishes.

@kathy22wright Thank you so much for your comments! The frustrations that I felt after leaving the doctor's office gave me a headache that lasted all that day. But I have to realize that there are others who can't fully relate to the pain from PMR, and one of them was my GP. I will continue to taper down on my intake of prednisone. I haven't given up!

Relapses like that are normal and usually a result of tapering too fast. I’m in a relapse now after 6 years of remission. Came on slower this time and not as bad so far. Treating effectively with diclofenac

@kathy22wright true, the pain is like nothing else. It’s not in the joints but the muscles. I’ve told people I’d rather pass a kidney stone every day than go through PMR. I’m out of remission now but have been able to tolerate the pain with diclofenac

@mwhite6262 I am (I hope)at the other end of my journey with prednisone but I can relate. I started at 20mg and noticed when I attempted to wean off by dropping 3 mg at a time I paid for it with flare up the following day. So your reality for that missed dose was that you inadvertently began a waning process of 49mg to 0mg and the body’s reaction was what I would see as a normal one to weaning too quickly. My rheumatologist told me that PMR and treatment with prednisone can be anywhere from One year to Five years. Be patient and though not a doctor or educated in treatment I can tell you what I did when I realized late in day that I missed a dose. I still took the dose then and instead of taking again in morning, waited took that days dose maybe 2/3 hours back from the time of dose the day before and then backed into taking at original time. It may take a few days to do that and it may not matter, but it is what I did and it worked. God Bless .. . stay patient …

Thank you for that guidance in the absence of hearing back from my doctor! Lesson learned the hard way...but never forgotten going forward! I will not wait the full day before taking a dose once I realize I missed it. Ugh on the 1 to 5 year treatment, trying to wrap my head around that, but I have been reading as similar timeframe along the way as I try to educate myself best I can before my reuhematology appointment. I am trying ti stay patient and avoid being my own worst enemy by making sure I do everything I can to help myself. I appreciate you taking the time to share your experience with me. Thank you so much!

I'd been off Kevzara for six months and then had symptoms like you describe. My dr put me back on Kevzara, which is working for the most part. The symptoms were slightly different than the original but different than everyday aches and pains.