Recently Diagnosed PMR Disease Progression

Hello @kmmi . I too was diagnosed very recently (around April 9th). And, my family doctor had me try a blast prednisone of 2 weeks, starting with 20 mg for three days and then 15 mg for three days and so on to 0. It worked at relieving my symptoms the first three days but with each successive drop I felt more and more pain. This is not a common approach and is not found in any literature that I have come across. It was a nice attempt and helped to further diagnose me but we were pretty sure I had/have PMR based on the clinical presentation, ESR and CRP blood numbers, and then the quick response to a 20 mg dose of prednisone. I started a "standard" dosage of 15 mg and am following the taper protocol outlined in an international study from 2015. It is a basic protocol but clearly it is just a guide as everyone has a different experience. I stayed on 15 mg for a month and tapered to 12.5 after that. I have been on 12.5 mg for the last three weeks and then just dropped to 10. My first drop to 12.5 mg came with about a level one pain and stiffness in the shoulders and neck. People on Mayo Clinic Connect said that that was not too uncommon and should diminish in a week or so. It did and I am not 100% after three weeks on the 12.5 but at an almost undetectable pain level. I did try some tylenol and it helped at first taper. However, what you describe sounds more like the enigmatic "flare" that we hear about. I was told by this chat room that if the pain continued and got worse after each day or week then I was tapering too fast and should go back to the original dose. In other words, I would be in a flare if that were occurring. Fortunately I have not had that happen with my first taper to 12.5 mg from 15 mg. I am hoping for the same with the drop from 12.5 mg to 10 that I just started this morning. Yes, prednisone is frightening but also a miracle. My doctor too and virtually every friend says "you gotta get off that stuff ASAP". Of course I and we all know that but there is not much else we can do. Kevzara (one of the biologicals) is possible but as far as I know, only after a fail or two on tapering. It sounds like some Drs are able to get insurance to budge and allow it earlier from what I have gleaned from this chat room. I might try that with my insurance but that can be a mountain to climb. My hope is to get to single digits with the prednisone and then look into it if I have trouble going down. I am more frightened off the prednisone creating a new problems for me than I am the pain of PMR some days but a short taste off that pain and debilitation reminds me to keep on the prednisone for now. Good luck.

@jeff97 would you care to tell of your symptoms of GCA ? I had noticed my temple swelling where my glasses are on the left side and having headaches, pain and tenderness. Yesterday I noticed both sides was swelled and having a headache on both sides. I can see the artery/vein bulged out above my glasses

Thank you so much for your input.
Both my primary care doctor and rheumatologist seem to want me off the prednisone as fast as possible.
But as you and others have said maybe the taper every 2 weeks is just too fast.

HI, @sbtheplumber, best to seek medical help immediately. If you experience any visual disturbance, go to an Emergency Room. GCA can cause loss of vision and blindness. It needs to be treated quickly.
I had PMR for a number of months, then GCA and relapsed once so far. I had short stabbing pains in my face, from my nose to my ear, scalp tenderness, a dry cough, loss of appetite, fatigue, an itchy torso, and visual disturbance, three times. I could only see white out of my right eye. Fortunately, I didn't lose any vision.
Are you currently taking anything for PMR? GCA requires a pretty high dose of prednisone - 40 - 60 mg daily, depending on the person's size, I think.
Anyway, immediate access to appropriate medical treatment is critical for GCA.

I was diagnosed with PMR and possible GCA, July 2024. My GCA symptoms were headaches that were over my eyebrows and radiated across my temples, over and behind my ears. Sometimes, they'd just be over the temple. Sometimes, behind my ears. I never noticed bulging temporal arteries. I had a bilateral temporal artery biopsy, within 8 days of starting 60 mg. of prednisone. The biopsy report was 'negative', but it also stated that that didn't mean I didn't have GCA. The doctor may not have gotten a sample of the affected artery. Don't ignore your symptoms.

Get it checked as soon as possible. Say exactly what you just wrote and a medical professional should want to see you sooner rather than later. Today wouldn't be too soon. I just did a Google search of your symptoms exactly how you wrote it. Artificial intelligence said the following.

"Based on the symptoms you're describing, particularly the swelling and tenderness in your temples, the headache, and the visible bulging artery/vein, this sounds highly concerning for Giant Cell Arteritis (GCA), also known as Temporal Arteritis."

HI, @sbtheplumber, best to seek medical help immediately. If you experience any visual disturbance, go to an Emergency Room. GCA can cause loss of vision and blindness. It needs to be treated quickly.
I had PMR for a number of months, then GCA and relapsed once so far. I had short stabbing pains in my face, from my nose to my ear, scalp tenderness, a dry cough, loss of appetite, fatigue, an itchy torso, and visual disturbance, three times. I could only see white out of my right eye. Fortunately, I didn't lose any vision.
Are you currently taking anything for PMR? GCA requires a pretty high dose of prednisone - 40 - 60 mg daily, depending on the person's size, I think.
Anyway, immediate access to appropriate medical treatment is critical for GCA.

Teri or anyone else what doc does this fall under should I see my neurologist, rheumatologist, cardiologist, PCP

Any chance your ears turn red I haven’t checked to see if there related to each other . I’ve had burning ear syndrome for over a year

Teri I’ve not seeked any medical attention I just started noticing after a hair cut that my glasses are pushing into my right temple and that’s where I’m having headaches and then a couple days later both sides are pushing in. I could see the veins or arteries bulging out on both sides. I woke up Sunday morning when shaving I noticed my right side of my face had a numbness feeling. I’m going to call and see if eye doc can adjust my frames today to relieve the pressure.