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PMR: Are there treatment alternatives to Prednisone?
Hi, all. I'm wondering if anyone is finding any alternatives to Prednisone in treatment of PMR?
I've been on the PMR/Prednisone train for about 6 months now (was in pain and stiffness for a year or two before but just thought I was "getting old"), being treated through Rheumatology at Shands Hospital (Great people, like Mayo, I'm sure.) in Gainesville, FL. I started at the high dose of 60 mg, it was amazing--within days I felt like I was invincible, having delusions of grandeur due to "Prednisone Psychosis" (It's a thing. And I ride it for all it's worth. 🙂 )
--and launched into crazy lucid dreams and auditory hallucinations--honest to God, one night I heard Wolf Blitzer from CNN standing at the foot of my bed and in a clearly audible voice say: "Right." -and I was up for the night and most nights after. In fairness to my brain, I watch The Situation Room sometimes, so I should've seen that coming.
I was only sleeping, like 1-2 hours a night, but had incredible energy. My nocturnal meanderings included a voracious appetite--for which I tried to stave off weight gain by eating large quantities of vegetables. My wife refers to me as "The Were-rabbit", with appropriate emojis. And with my morning evacuations I could fertilize half of England. I've retained fluids to the point that I look kind of like a squirrel with a mouthful of acorns? Only without the benefit of said nutritional content. I look like--if Alfred Hitchcock and Winston Churchill had a love child? I would be that child.
These days, I've tapered down to 15 mg/day, and the pain and stiffness are returning. Now I look like Winston Churchill/Alfred Hitchcock (Where did my chin go? I distinctly remember having a neck.), only I'm dragging out my cane again (Okay, that's a little Churchillian, at least) to get up and move around.
If I sleep 5 hours at a stretch, I call that:
"Boy, I'm sleeping the whole day away!"
Fortunately for me, I'm teaching remotely via Zoom, and my students are all so kind as to not ask what happened to my chin. Some days, I can't even remember if I was wearing pants. They love me for the madman that I am.
As I consider increasing dosage and heading back into Prednisone Psychosis land, I wondered if there's an alternative to allow me to hop off the train?
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Welcome @mpm! My PMR has been in remission for 5+ years now but I do have osteopenia and have wondered about preventing bone loss. There is another discussion you might find helpful on the topic here:
--- Prednisone and bone loss. I was diagnosed with PMR: https://connect.mayoclinic.org/discussion/prednisone-and-bone-loss-i-was-diagnosed-with-pmr/.
Tapering can be difficult if you try to taper off too fast. Here's a discussion that you might want to look at:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.
Do you mind sharing what dosage of prednisone you took when you started PMR treatment?
Hi John - I am healthy 72 years old, PMR came on within 36 hours. Primary care doctor referred to a Rheumatologist. Dr stated I was classic book example and prescribed 2.5mg starting with 6 pills. I did receive some relief - After 14 days, I began 5 pills a day and the pain was limiting me with my daily routine. I called the DR, sent an email and after 13 days in pain Dr responded with, “I will prescribe 5mg this one time. You need to pick what bone RX to take" I had already replied with the test results stating once inflammation is lower, I would weigh the pros and cons of these RX's.
I decided to choose a new Rheumatologist. I did see new DR last Thursday, she ordered 10 blood test and reviewed all. I am waiting for results and what's next!
I believe in the medical profession yet I have to be an advocate for my health without adding new side effects!
Thank you-
mpm
Hi @mpm, You definitely need to advocate for yourself. My Mayo rheumatologist started me on 20 mg prednisone for both occurrences of PMR. The first time took me 3 and half years to taper off and the second time around 6 years later took me 1 and a half years to taper off. I've been in remission for 5+ years now at age 80.
Here's a few references you might find helpful if you have a dialogue with your rheumatologist or PCP:
--- The Productive Rheumatology Appointment Guide - Learn how to take back control of your appointments and healthcare!:
https://connectedrheumatology.com/the-productive-rheumatology-appointment-guide/
--- GCA & PMR - Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429
--- 2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative:
https://ard.bmj.com/content/74/10/1799
My rheumy had me keep a daily log with the level of pain when I woke up and the dose for that day so that I could make better decisions when tapering. Do you keep a daily log?
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6 ReactionsI can’t give you any help. But, I came down with PMR within 2 weeks of my second booster. Doctors don’t like to confirm that the shot and the onset of PMR were related.
Actemra
Maybe.
Anyone get dry eyes from prednisone? I’m at 9 mg for a month and experiencing dry eyes on and off.
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1 Reaction@tigre24
Not had that , yet . Sorry to hear you do.
Blessings
Thanks…
Please check with an eye doctor. Prednisone can cause many eye problems including glaucoma and eye problems are often a preclude to GSA.. My doctor has me on Travaprost drops.
Thanks. I have scheduled an eye exam…