Prednisone only mildly helpful for my PMR, is this common?

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Thank you all for your comments, they're all so helpful. Turns out my initial dose of prednisone (15mg) was too low. At another ER visit they started me on 40mg and the pain decreased within 24 hours. I haven't been able to go below 20mg, however, without the pain coming back completely, which is concerning. (Labs have shown high levels of inflammation) I've made significant changes to my diet and have been exercising as much as I can, but the truth is that so far, only prednisone has made a difference. I have an appointment with a rheumatologist but not until 10/31. (I'm on a cancellation list and will hopefully get in before then.) Fortunately my neurologist works with PMR and is handling it for me until then. I just hope I can cut down on the prednisone. Thanks again, everyone!

@ldingwall88 even at 20mg a day you need to watch for possible of side effects of long term prednisone. I do hope you are seeing your PCP to help with the effort of keeping an eye on your overall health. Often even a rheumy does not work on the holistic challenge and problems that long term prednisone can present. It will depend on the individual doctor.
Rheumatologist are in very short supply everywhere and needing to wait 6 months or more before a new patient appointment is not unusual.

You mentioned only getting a few hours of relief from a certain dosage. This may be due to the half-life of a drug - this is the time it takes for a dose you took to be half as strong as it was when you took it. Every drug, OTC and Rx, has a half-life. Basically they consider you have to have about 5 half-lives for a drug to be completely out of your system. If a drug has a 4 hour half-life then it would take 20 hours for the amount of the drug in your system to be negligible. If the half-life is 10 hours then it would take 50 hours. Some drugs have half-lives measured in days to weeks, some hours. Prednisone is 2-3 hours.

Possibly you can do the math and track your symptom return on a predictable schedule based on half-life. This type information can help your doctor adjust your dosage or spacing to provide the relief you need. The adjustment may not simply be adjusting one or the other or both - prednisone is a complex drug and you should visit with your doctor about adjustments because there could easily be ways they do not want you taking the drug also. It is one thing to know about you and the half-life cycle, it is an entirely different thing to know what adjustments are medically appropriate.

Your journey will me unique. The combined experiences you can discover here has proven very valuable to me. I wish you well and please check-in from time to time with updates.

I had the same experience when I started at 15mg. I felt better by day 5 but the pain didn't completely go away. I felt the dosage wasn't quite high enough. But the pain was manageable.

When I was first diagnosed and was started on prednisone the results were complete relief within 6 hours. It was unbelievable.

Seems such a vague illness. One size doesn’t fit all. Fortunately my dr was familiar with it so I got diagnosed straight away. I’ve been on prednisone for six weeks. Think it has helped a bit but every morning I am so stiff. Improves by mid morning. All other conditions like RA discounted. I am also don’t have raised blood markers but my specialist says 5% of people don’t. So I am just continuing. Had an unusual day recently where I had far more coffee than usual (4 times usual) and was much worse next day. My diet is healthy but now v careful.

Welcome @andos16, You are right, PMR is definitely not a one size fit all condition. It is good that your doctor was familiar with it. I had a referral to a Mayo rheumatologist for my diagnosis. Stiffness is fairly normal in the morning even when things are going well with PMR tapering. There is another discussion you might find helpful:

--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

I found that mild exercise without overdoing it was key for helping with my PMR, along with eating better. Do you try to exercise or walk as part of your daily routine?

Thanks for yr reply. I was playing golf twice a week, gym 4 times, bike riding or walking before PMR. This has clipped my wings but I do something every day, just later in day than I used to.

Hello - i hear you! PCP diagnosed me April 26 ,I have all the physical hallmarks but not miraculous response to 15mg ( 10mg + 5mg at dinner) . Managed to get prompt consult with Rheumatologist, dose increased to 20mg this past Monday- but all taken at morning . Last night at 3:30 am all of my limbs were stiff and i could not move !! this is a drastic worsening and i know because i am keeping a excel spreadsheet pain journal. I divide the day into three parts and then report shades of green, orange and bold red writing . 15mg Prednisone helped the stiffness only in lower extremities and only the shoulders/arms by midday on average. I pay special attention to if. pain awakened at night , and then the 6am to 2pm period. Multiplying all together - i guess my initial response to 15mg was only 50% ? can't do the math : ) waiting for a call back now and dreading long Memorial Day weekend when can't communicate w doctor's office for 3 days- eek!

i found this description helpful with some interesting vocabulary:
●Morning stiffness and the gel phenomenon – Gelling, or stiffness with inactivity, is a hallmark of synovitis in the systemic rheumatic diseases in general, but in PMR, this phenomenon can be notably severe. Morning stiffness in PMR is invariable; its absence excludes a diagnosis of PMR. In untreated PMR, morning stiffness can last into the late morning or afternoon. After inactivity, such as after a longer car ride, stiffness can recur. Nocturnal pain is common.

Spread awareness as much as you can -- my cousin had PMR about 4 yrs ago ! he is a male and 10 yrs older , responded very well , no relapse! When i googled 'symmetrical pain in 4 limbs " PMR pops up as it should - in fact take a look at this blurb when i was on Yale rheumatology website yesterday :
BTW I've had two negative Lyme tests to be sure !

"Lisa Sanders, M.D. ’97, HS ’00, assistant clinical professor of medicine: she writes the monthly “Diagnosis” column in theNew York Times Magazine.
Now Sanders has written a book that combines the medical sleuthing of “Diagnosis” and House with an examination of the state of diagnostic skills among contemporary physicians....
With each story of a difficult diagnosis, Sanders expands on the issues that made it so. Recurrent chest pain and weakness in a young man. A heart attack? It turns out to be pernicious anemia. A woman with long-term weakness and joint pain. “Chronic” Lyme disease? No—polymyalgia rheumatica".