PMR Dosages and Managing Symptoms

Posted by maryft @maryft, Aug 16, 2021

I've read through the discussions and note all the different dosages of prednisone, different lengths of time taking prednisone, plus the addition of other meds, for PMR. I also note that the tapering of dosages and time frames are so varied from person to person. It appears there is not a set standard among physicians. How does one know if they were/are receiving the right dosage? Obviously, if symptoms subside, the dose is working, but after tapering if the symptoms return, was the initial dosage correct? I've also read that a person shouldn't be on prednisone long term, but there are many who've been on it for a few years. Its all very confusing.

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

Though I was diagnosed with PMR sometime in Oct. 2020, I am not only taking one 4 mil half pill every other day. Some of you it appears are taking more! I probably should not be whining. I think I should go back to at least one whole pill every other day but the Rheumatologist has not suggested it yet.
I was recently diagnosed with bilateral carpal. Both hands, fingers, thumbs are exquisitely tender, swollen. I have a difficult time functioning. Surgery was suggested.
So, given the situation, I decided to first try, and so far successfully, to take 2 Advil in the early a.m., and 2 Tylenol in the latter part of the day. The swelling is down, the stiffness is better; and it appears I have it somewhat under control. I also ice the right especially. I am however, coming to the realization that I may be permanently on this medication at a lower dosage. Not happy but I, as many others would like to get back to a semi normal life!

The one gentleman is right about cutting off salt and some spirits. I am a beer and wine drinker. I totally cut out the wine two years ago with the PMR diag. The beer I have especially recently, with dinner. I do feel a bit more inflammation when I've had the beer.
There us a product called Mrs. Dash that is salt free with lits of herbs, spices, etc. I use it for most of my meals. The product has many flavors and it satisfies the salt cravings.
I am having a total knee replacement the latter part of August - this year. I do not want any other surgery beforehand.
I know it may take a toll on my hands but I need to have this surgery!

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I am a 72-year-old, new to this group. My diagnosis and the beginning of my prednisone taper occurred in November of 2022. I had just finished an addition to my home on which I worked very hard for 18 months when PMR hit like a ton of bricks. The prednisone was almost cartoonishly effective...akin to Popeye's spinach (I realize that this reference dates me, but I'll bet most of the readers here get it!).

Anyway, my question has to do with making the distinction between hip osteoarthritis and PMR. The doc tells me that x-rays show hip arthritis, so we know it's around, though it had not been symptomatic.

I am doing a taper, but always have pain in the front groin area. I would try tamping it down with Ibuprofen but I am massively allergic to NSAIDS. If the pain I am feeling is osteoarthritis, then the taper is totally doing its job and I could even push it a little more. Sed rate and CRP are down to normal range, so this seems like a possibility. But if not, then I may need to ease up the taper a little.

Soooo, is it possible to distinguish between PMR and osteoarthritis symptoms?

Thank you for reading.

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@walkamok

I am a 72-year-old, new to this group. My diagnosis and the beginning of my prednisone taper occurred in November of 2022. I had just finished an addition to my home on which I worked very hard for 18 months when PMR hit like a ton of bricks. The prednisone was almost cartoonishly effective...akin to Popeye's spinach (I realize that this reference dates me, but I'll bet most of the readers here get it!).

Anyway, my question has to do with making the distinction between hip osteoarthritis and PMR. The doc tells me that x-rays show hip arthritis, so we know it's around, though it had not been symptomatic.

I am doing a taper, but always have pain in the front groin area. I would try tamping it down with Ibuprofen but I am massively allergic to NSAIDS. If the pain I am feeling is osteoarthritis, then the taper is totally doing its job and I could even push it a little more. Sed rate and CRP are down to normal range, so this seems like a possibility. But if not, then I may need to ease up the taper a little.

Soooo, is it possible to distinguish between PMR and osteoarthritis symptoms?

Thank you for reading.

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Welcome @walkamok, I can definitely relate to Popeye's spinach 🙃but then I'm older than you. I also have degenerative arthritis and would have difficulty distinguishing the difference between the PMR related pain and the osteoarthritis associated pain. You might want to join in the discussion here where @dadcue has discussed the difficulty.

--- PMR and Osteoarthritis: https://connect.mayoclinic.org/discussion/pmr-and-osteoarthritis/

I think it helps to track your level of pain and the dose you are on. When it was time for me to taper down, if my pain level was above a 2, I would give it a couple of extra days to see if it stayed the same and then either go back up 1/2 of the previous taper or down to my next lower dose in the taper.
Do you keep a daily log with your pain and dosage level?

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@johnbishop

Welcome @walkamok, I can definitely relate to Popeye's spinach 🙃but then I'm older than you. I also have degenerative arthritis and would have difficulty distinguishing the difference between the PMR related pain and the osteoarthritis associated pain. You might want to join in the discussion here where @dadcue has discussed the difficulty.

--- PMR and Osteoarthritis: https://connect.mayoclinic.org/discussion/pmr-and-osteoarthritis/

I think it helps to track your level of pain and the dose you are on. When it was time for me to taper down, if my pain level was above a 2, I would give it a couple of extra days to see if it stayed the same and then either go back up 1/2 of the previous taper or down to my next lower dose in the taper.
Do you keep a daily log with your pain and dosage level?

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I have been so glad I came across this site everyone has been so helpfull it's so much easier when you can relate to others and they understand what your going through so welcome and enjoy the journey back to normality 👍

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I'm guessing I think that all my conversing is with people from across the pond the USA??
I actually come from
Edinburgh Scotland
But have lived in north east of England for many many years there for its hands across the sea 🙋‍♂️👍

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Hi, I am very new to PMR and have only been taking Prednisone for 3 weeks. I started at 20mg. then to 30mg then back down to 25mg. It definitely helped with my pain and mobility but I would not like to be on it for the long term. I am not certain what will happen as I begin more tapering. My only advice to you would be to see a Rheumatologist. They specialize in autoimmune disorders and hopefully, if you find one who is empathetic to your needs, you will get your questions answered and begin a course of treatment that is suited to you specifically. The reading I have done within this group and out in the vast internet has helped me to realize that this is a very unique condition. Each person brings their own DNA, lifestyle choices, body type, ability to deal with stress, etc... So be patient, make some dietary changes that work for you, don't beat yourself up and know we are all in this together. Good Luck, Liz Ward

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@johnbishop

Welcome @walkamok, I can definitely relate to Popeye's spinach 🙃but then I'm older than you. I also have degenerative arthritis and would have difficulty distinguishing the difference between the PMR related pain and the osteoarthritis associated pain. You might want to join in the discussion here where @dadcue has discussed the difficulty.

--- PMR and Osteoarthritis: https://connect.mayoclinic.org/discussion/pmr-and-osteoarthritis/

I think it helps to track your level of pain and the dose you are on. When it was time for me to taper down, if my pain level was above a 2, I would give it a couple of extra days to see if it stayed the same and then either go back up 1/2 of the previous taper or down to my next lower dose in the taper.
Do you keep a daily log with your pain and dosage level?

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Thank you for your very helpful comments and the link to a relevant discussion.

Yes I do track pain and dosage. And I do an AM and PM dose instead of a single AM dose, as the single dose does not work for me. In a former life I used a lot of spreadsheets so I chart the progress, which I find helpful. I attach a PDF of it here.

Again, thank you!

Shared files

Walkamok Chart (Walkamok-Chart-1.pdf)

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@lizward46

Hi, I am very new to PMR and have only been taking Prednisone for 3 weeks. I started at 20mg. then to 30mg then back down to 25mg. It definitely helped with my pain and mobility but I would not like to be on it for the long term. I am not certain what will happen as I begin more tapering. My only advice to you would be to see a Rheumatologist. They specialize in autoimmune disorders and hopefully, if you find one who is empathetic to your needs, you will get your questions answered and begin a course of treatment that is suited to you specifically. The reading I have done within this group and out in the vast internet has helped me to realize that this is a very unique condition. Each person brings their own DNA, lifestyle choices, body type, ability to deal with stress, etc... So be patient, make some dietary changes that work for you, don't beat yourself up and know we are all in this together. Good Luck, Liz Ward

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Well said Liz I hope you get it sorted I just think it's very frustrating we don't really know how it takes when you look at the length of time a lot of people have been on the medication and at the end of the day the end result is all that matters 👍

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Hello all - just got off a zoom call W/Rheumatologist to begin the first "taper" for me 30mg to 27.5 mg. I was interested to see this thread started in 2021 moved to the top with other newly Dx patients such as myself ( onset in mid April, 1st Rheum appointment May 22 ) making commnets. I am not on facebook , I am on medical leave of Absence now, so aside from logging into e-bird , the benefit of reading and writing about PMR with this group is so HELPFUL ! @walkamok I am a Molecular Biologist and I have to say, I never thought to plot my pain data !! : ) I could show your graph in Lab Meeting!

What I want to share here, and on then again, on PMR and Clinical trials thread is this : A trial in Denmark, where as noted the prevalence, is higher (than in USA) !
Dose Reduction and Discontinuation of Prednisolone Using Structured Treat-to-target Taper in Patients With Polymyalgia Rheumatica
Polymyalgia rheumatica (PMR) has an incidence of approximately 1000/10^6 for persons more than 50 years. Treatment with prednisolone carries several significant adverse effects, and it is therefore essential to taper prednisolone as fast as possible. Systematic treatment strategies (treat-to-target) is the most important improvement of disease management for other rheumatic diseases such as rheumatoid arthritis in the last decades. 2023 could be a better year for PMR awareness overall !

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@nyxygirl

Hello all - just got off a zoom call W/Rheumatologist to begin the first "taper" for me 30mg to 27.5 mg. I was interested to see this thread started in 2021 moved to the top with other newly Dx patients such as myself ( onset in mid April, 1st Rheum appointment May 22 ) making commnets. I am not on facebook , I am on medical leave of Absence now, so aside from logging into e-bird , the benefit of reading and writing about PMR with this group is so HELPFUL ! @walkamok I am a Molecular Biologist and I have to say, I never thought to plot my pain data !! : ) I could show your graph in Lab Meeting!

What I want to share here, and on then again, on PMR and Clinical trials thread is this : A trial in Denmark, where as noted the prevalence, is higher (than in USA) !
Dose Reduction and Discontinuation of Prednisolone Using Structured Treat-to-target Taper in Patients With Polymyalgia Rheumatica
Polymyalgia rheumatica (PMR) has an incidence of approximately 1000/10^6 for persons more than 50 years. Treatment with prednisolone carries several significant adverse effects, and it is therefore essential to taper prednisolone as fast as possible. Systematic treatment strategies (treat-to-target) is the most important improvement of disease management for other rheumatic diseases such as rheumatoid arthritis in the last decades. 2023 could be a better year for PMR awareness overall !

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@johnbishop the trial link I found is this
ICH GCP
US Clinical Trials Registry
Clinical Trial NCT05636501
Treat-to-target Prednisolon Taper in Patients With Polymyalgia Rheumatica: https://clinicaltrials.gov/ct2/show/NCT05636501

The treat to Target concept is described here for PMR: Recommendation
Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica published 2023 - first author Dejaco, C.
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429

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