1. < Polymyalgia Rheumatica (PMR)

Advice/experience about going back on Prednisone

Posted by bitsygirl @bitsygirl, Jan 22 2:50pm

I was diagnosed with PMR in December 2022. I did a short course of prednisone (3 weeks?) if I recall correctly and it helped, but it did not go away. I was referred to a rheumatologist but couldn't get an appointment until Sep. 2023. It got slowly better over that time. Rheumatologist put me on a short course again (10mg for a couple of weeks) and started working at another facility. Today (four months later) the new rheumatologist wants to put me on an extended regimen of 3 weeks each of 10mg, 9mg, 8mg, .... down to 1mg I guess. The pain now is completely livable. I have to be careful putting a shirt or jacket on and turning over in bed at night. Riding a bike requires periodic breaks, but I can ride and lift weights as I like more or less. I have been thinking it might be getting slightly worse and my ESR has gone up by a couple of points between meeting with the rheumatologists. But again, annoying but completely livable.

To finally get to the point, I am wondering if its a good idea to go on the predisone. I've read about people who can't get off it, and I'm wondering whether taking another round might create some kind of dynamic that makes it hard to get off later on. Is this crazy? Can it possibly make the PMR worse when I don't take predisone?

I asked my rheumatologist and she said no. I'd just feel better to hear the experience of anyone out there who has gone through something similar. I'm finding the decision difficult.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

seniormed | @seniormed | Jan 29 9:50pm
In reply to @prestol "Thanks for the links you sent about the many types of spondyloarthritis. This topic is new..." + (show)
@prestol

Thanks for the links you sent about the many types of spondyloarthritis. This topic is new to me and I have a lot to learn. Good luck on avoiding spinal fusion surgery, which is also my goal. I was just able to schedule with a rheumatologist this week instead of one month out, so hopefully will be getting some answers to my many concerns about prednisone.

Jump to this post

Also consider melatonin for insomnia. There is data demonstrating that it is anti- inflammatory and a metabolic
modulator. Very unusual to have side effects

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2 replies
froehlich22 | @froehlich22 | Jan 30 8:22am

I would do the prednisone taper slowly like RA recommends. They will base these decisions based on how you feel but mostly in your ESR and CRP levels.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 30 8:59am
In reply to @rocjr1 "Given that your symptoms are currently manageable/liveable, I wonder if it makes more sense to start..." + (show)
@rocjr1

Given that your symptoms are currently manageable/liveable, I wonder if it makes more sense to start on a lower dose of prednisone? I’d ask your doctor about that and whether trying 4 or 5 mgs (just for example) a day would be a good compromise given your concerns.

Jump to this post

Hi @rocjr1, Welcome to Connect. I think it's always a good plan to discuss options with your doctor or rheumatologist for starting or tapering off prednisone. PMR can be challenging for doctors as well as us patients. You mentioned in your profile that you were just diagnosed with PMR on 1/18/24 and started with 20 mg prednisone. Also that you are on a fast taper and currently at 17.5 mg prednisone with the PMR symptoms improved but not dramatically.

My PMR is currently in remission. I've had 2 occurrences and started both with 20 mg prednisone. The one thing I've learned with the help of my Mayo rheumatologist is that tapering too fast is not the way to go and can make for more flare ups along the way. The one thing he suggested that really was helpful for me was to keep a daily log with my level of pain when I woke up in the morning and the dose of prednisone for that day. My first time with PMR took 3 and half years to taper off. The second time following a six year remission only took 1 and half years to taper off which I attribute to making a lifestyle change - more exercise, eating healthier and eliminating most inflammatory foods and sugar.

When it was time on my schedule to taper, if my pain level was greater than 2, I waited a few days to see if it would get better at the same dose. If not I bumped up the dose to half of the previous taper down so that I wouldn't be going all the way back to the previous dosage.

Do you keep a daily log of your symptoms for tapering?

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1 reply
rocjr1 | @rocjr1 | Jan 30 10:36am

Thanks for the reply, John, and for the wisdom you’ve gleaned from your experiences with PMR, prednisone therapy and tapering. I have not started a diary but I think its a good idea as I start on this journey. I ‘m also a bit concerned about the speed of the taper I’m on as I learn more about the art of tapering. I have a follow up appointment with my rheumatologist next Monday and I plan to raise that with him. I also think it likely that I will soon go on a biologique such as Actemra or Kevzara (my rheumatologist thinks I probably should).

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rocjr1 | @rocjr1 | Jan 30 10:51am
In reply to @johnbishop "Hi @rocjr1, Welcome to Connect. I think it's always a good plan to discuss options with..." + (show)
@johnbishop

Hi @rocjr1, Welcome to Connect. I think it's always a good plan to discuss options with your doctor or rheumatologist for starting or tapering off prednisone. PMR can be challenging for doctors as well as us patients. You mentioned in your profile that you were just diagnosed with PMR on 1/18/24 and started with 20 mg prednisone. Also that you are on a fast taper and currently at 17.5 mg prednisone with the PMR symptoms improved but not dramatically.

My PMR is currently in remission. I've had 2 occurrences and started both with 20 mg prednisone. The one thing I've learned with the help of my Mayo rheumatologist is that tapering too fast is not the way to go and can make for more flare ups along the way. The one thing he suggested that really was helpful for me was to keep a daily log with my level of pain when I woke up in the morning and the dose of prednisone for that day. My first time with PMR took 3 and half years to taper off. The second time following a six year remission only took 1 and half years to taper off which I attribute to making a lifestyle change - more exercise, eating healthier and eliminating most inflammatory foods and sugar.

When it was time on my schedule to taper, if my pain level was greater than 2, I waited a few days to see if it would get better at the same dose. If not I bumped up the dose to half of the previous taper down so that I wouldn't be going all the way back to the previous dosage.

Do you keep a daily log of your symptoms for tapering?

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Oh, and forgot to ask: who is your Mayo doc and at which Mayo location? I hope you don’t mind me asking.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 30 11:15am
In reply to @rocjr1 "Oh, and forgot to ask: who is your Mayo doc and at which Mayo location? I..." + (show)
@rocjr1

Oh, and forgot to ask: who is your Mayo doc and at which Mayo location? I hope you don’t mind me asking.

Jump to this post

I get a new PCP every 2 or 3 years at my local Mayo Family Clinic but my rheumatologist at Mayo Rochester was Dr Thomas Osborne - https://www.mayoclinic.org/biographies/osborn-thomas-g-m-d/bio-20054469#!

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1 reply
prestol | @prestol | Jan 31 8:06am
In reply to @seniormed "Also consider melatonin for insomnia. There is data demonstrating that it is anti- inflammatory and a..." + (show)
@seniormed

Also consider melatonin for insomnia. There is data demonstrating that it is anti- inflammatory and a metabolic
modulator. Very unusual to have side effects

Jump to this post

Thanks @seniormed. About melatonin. I have tried it before (3-4 mg) without success. My problem isn’t getting to sleep, it’s staying asleep past 3 am. Maybe I’m not using it correctly. Appreciate any specific suggestions.

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1 reply
megz | @megz | Jan 31 8:20am
In reply to @seniormed "Also consider melatonin for insomnia. There is data demonstrating that it is anti- inflammatory and a..." + (show)
@seniormed

Also consider melatonin for insomnia. There is data demonstrating that it is anti- inflammatory and a metabolic
modulator. Very unusual to have side effects

Jump to this post

Melatonin should only be taken in low doses with prednisone as it can reduce prednisone's effectiveness. Some doctors say it shouldn't be taken at all, but I take 1mg each night on prescription (to compensate for the loss of natural Melatonin caused by beta blocker meds) and it does help with sleep. My doctor said to separate the prednisone and Melatonin doses by at least a few hours.

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seniormed | @seniormed | Jan 31 10:35am

I haven’t found any studies explaining how melatonin and prednisone could interact. Since oral melatonin has a short life in our blood levels it would be fine to separate them by several hours if you are prescribed prednisone in the evening.
One of the reasons it only works best for falling asleep
may be that levels drop soon overnight.
Always a good idea to check drug interactions online and with your pharmacist.
I appreciated my pharmacist reminding me to hold
statin when going on Paxlovid since they have conflicting metabolism Higher doses of melatonin are being actively studied in critical care and inflammatory diseases. I take 5 mg an hour before bed and still wake
in the early hours. Have not found any negative interactions while being on Humira.

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prestol | @prestol | Feb 1 9:17am

My new rheumatologist approved the use of low-dose benedryl (12.5 mg) when I wake at 3 am, and if that doesn’t work I can go to 25 mg. Some people are really groggy in the morning but that would be a fair trade-off for me to get more sleep. She increased my prednisone to 30 mg yesterday since my symptoms were barely improved on 20.

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