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.

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@walkamok

You are clearly having a very rough time. Is the prednisone not working?

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@walkamok I was thinking the same thing.
@nyxygirl taking 30mg, that must have more side effects then? I haven't been pain-free as I was on 15mg to now 12.5mg per day. I will deal with the breakthrough pain though as the other annoying side effects, getting only 5-6 hours sleep, heart pounding after meals and anxiety attacks etc. have lessened quite a bit.
This is so not fun and thanks for the info.

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@vellen

@walkamok I was thinking the same thing.
@nyxygirl taking 30mg, that must have more side effects then? I haven't been pain-free as I was on 15mg to now 12.5mg per day. I will deal with the breakthrough pain though as the other annoying side effects, getting only 5-6 hours sleep, heart pounding after meals and anxiety attacks etc. have lessened quite a bit.
This is so not fun and thanks for the info.

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@vellen Your question echoes the topic of the this thread.
Perhaps others @johnbishop / a clinician ? Medical person? would like to chime in here ?
For me the prolonged morning stiffness/pain was too variable for my quality of Life and daily activity goals - I went on Medical Leave. Even working from home could not begin until about 2 pm ! I have (more* ) quickly been tapering 2.5mg/ every 6 days. So May 26 into June has been devoted to this I will get to that lower dose 10mg stage -but with this little blip - in the grand time course of this coming up - not worried about "hi dose side effects at all " *Perhaps @bfh3 could also update us on how he is faring ? I know we were on a similar start date of increasing to 30mg. ( I always think of you now when I mow my FLAT lawn with an electric mower!! : ) I upped @walkamok 's graph and used 2 axes !!! @lizward46 is also in this discussion ( May 31)

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@nyxygirl

@vellen Your question echoes the topic of the this thread.
Perhaps others @johnbishop / a clinician ? Medical person? would like to chime in here ?
For me the prolonged morning stiffness/pain was too variable for my quality of Life and daily activity goals - I went on Medical Leave. Even working from home could not begin until about 2 pm ! I have (more* ) quickly been tapering 2.5mg/ every 6 days. So May 26 into June has been devoted to this I will get to that lower dose 10mg stage -but with this little blip - in the grand time course of this coming up - not worried about "hi dose side effects at all " *Perhaps @bfh3 could also update us on how he is faring ? I know we were on a similar start date of increasing to 30mg. ( I always think of you now when I mow my FLAT lawn with an electric mower!! : ) I upped @walkamok 's graph and used 2 axes !!! @lizward46 is also in this discussion ( May 31)

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Hi @vellen and @nyxygirl, Unfortunately I am not a medical professional and have no medical background other than being a patient who has had 2 ugly PMR visitations. Fortunately my PMR has went into witness protection and is hiding. The only common factor I see from different members is tapering off of prednisone is different for each of us and slow and easy is the name of the game to get to remission. If it ever visits me again, I'm thinking of giving the Dead slow and nearly stop reduction plan (Tapering) a try ---
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

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@nyxygirl

@vellen Your question echoes the topic of the this thread.
Perhaps others @johnbishop / a clinician ? Medical person? would like to chime in here ?
For me the prolonged morning stiffness/pain was too variable for my quality of Life and daily activity goals - I went on Medical Leave. Even working from home could not begin until about 2 pm ! I have (more* ) quickly been tapering 2.5mg/ every 6 days. So May 26 into June has been devoted to this I will get to that lower dose 10mg stage -but with this little blip - in the grand time course of this coming up - not worried about "hi dose side effects at all " *Perhaps @bfh3 could also update us on how he is faring ? I know we were on a similar start date of increasing to 30mg. ( I always think of you now when I mow my FLAT lawn with an electric mower!! : ) I upped @walkamok 's graph and used 2 axes !!! @lizward46 is also in this discussion ( May 31)

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Thank you and this is the first time, I can say that a lawn has triggered a memory of me. The visual of your all green graph does look like a lawn.

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@johnbishop

Hi @vellen and @nyxygirl, Unfortunately I am not a medical professional and have no medical background other than being a patient who has had 2 ugly PMR visitations. Fortunately my PMR has went into witness protection and is hiding. The only common factor I see from different members is tapering off of prednisone is different for each of us and slow and easy is the name of the game to get to remission. If it ever visits me again, I'm thinking of giving the Dead slow and nearly stop reduction plan (Tapering) a try ---
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

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Thanks for your input John.
Your doggo looks like a real character!

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@nyxygirl

@vellen Your question echoes the topic of the this thread.
Perhaps others @johnbishop / a clinician ? Medical person? would like to chime in here ?
For me the prolonged morning stiffness/pain was too variable for my quality of Life and daily activity goals - I went on Medical Leave. Even working from home could not begin until about 2 pm ! I have (more* ) quickly been tapering 2.5mg/ every 6 days. So May 26 into June has been devoted to this I will get to that lower dose 10mg stage -but with this little blip - in the grand time course of this coming up - not worried about "hi dose side effects at all " *Perhaps @bfh3 could also update us on how he is faring ? I know we were on a similar start date of increasing to 30mg. ( I always think of you now when I mow my FLAT lawn with an electric mower!! : ) I upped @walkamok 's graph and used 2 axes !!! @lizward46 is also in this discussion ( May 31)

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Hi Everyone, I thought I would weigh in as I just had a dr. appt. with my rheumatologist. Recap: I was diagnosed in May 2023, started with 30mg of prednisone for one week, then to25 for one week, then to 20 for two weeks (approx). At our latest appointment she wants me to taper to 17.5mg for the next week, and continue 2.5, taper weekly until I get to 10mg. At 10 mg I will start a very slow taper (probably 1mg or less). Since I started on the prednisone I have had no joint pain whatsoever. Feels like a miracle until I start reading about the long term side effects of this drug. Today I had a dexa scan as I do have osteopenia. I am currently taking 1000 calcium, 2000 vit D, and vit K. Maybe this will offset the calcium leaching effects of the prednisone. I am continuing with a pretty strict anti inflammatory diet which has to be helpful in some way (otherwise I will begin to gorge on hotdogs and brownies). It does seem that doctors assess each patient individually based on so many variables. I also have no other underlying conditions that I know of. Good luck to all. I will keep you posted during this second phase of tapering. Liz Ward

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@lizward46

Hi Everyone, I thought I would weigh in as I just had a dr. appt. with my rheumatologist. Recap: I was diagnosed in May 2023, started with 30mg of prednisone for one week, then to25 for one week, then to 20 for two weeks (approx). At our latest appointment she wants me to taper to 17.5mg for the next week, and continue 2.5, taper weekly until I get to 10mg. At 10 mg I will start a very slow taper (probably 1mg or less). Since I started on the prednisone I have had no joint pain whatsoever. Feels like a miracle until I start reading about the long term side effects of this drug. Today I had a dexa scan as I do have osteopenia. I am currently taking 1000 calcium, 2000 vit D, and vit K. Maybe this will offset the calcium leaching effects of the prednisone. I am continuing with a pretty strict anti inflammatory diet which has to be helpful in some way (otherwise I will begin to gorge on hotdogs and brownies). It does seem that doctors assess each patient individually based on so many variables. I also have no other underlying conditions that I know of. Good luck to all. I will keep you posted during this second phase of tapering. Liz Ward

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@lizward46 thank you so much - we are in the April /May 2023 Dx newbie-group ; ) May I ask as I am also now at 22.5mg ( long story - I take 3X /day) - ha sounds like we have the same doctor !!

Have you achieved this 100% response without splitting the dose ?
What time of day do you take you Prednisone?
How is your sleep ? Today when I was awake at 3am (ARGH! ) I rested till 4am and then just went ahead and changed my morning dose time from 5am to 4am !! Good thing the sun rises here in MA very early now : )

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@lizward46

Hi Everyone, I thought I would weigh in as I just had a dr. appt. with my rheumatologist. Recap: I was diagnosed in May 2023, started with 30mg of prednisone for one week, then to25 for one week, then to 20 for two weeks (approx). At our latest appointment she wants me to taper to 17.5mg for the next week, and continue 2.5, taper weekly until I get to 10mg. At 10 mg I will start a very slow taper (probably 1mg or less). Since I started on the prednisone I have had no joint pain whatsoever. Feels like a miracle until I start reading about the long term side effects of this drug. Today I had a dexa scan as I do have osteopenia. I am currently taking 1000 calcium, 2000 vit D, and vit K. Maybe this will offset the calcium leaching effects of the prednisone. I am continuing with a pretty strict anti inflammatory diet which has to be helpful in some way (otherwise I will begin to gorge on hotdogs and brownies). It does seem that doctors assess each patient individually based on so many variables. I also have no other underlying conditions that I know of. Good luck to all. I will keep you posted during this second phase of tapering. Liz Ward

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I have GCA and it took me a long time to get to 10mg, three years, with lots of ups and downs(along with Actemra weekly). I'll be 83 in September.
My rheumatologist, who I really respect, had me reduce by .5 mg every 3-4 weeks after 10mg. You will feel better in many ways but probably fatigued; listen to your body. I'm thankful your doctor looks at the individual. I'm down to 3mg per day. Just had a bone scan last week and I was shocked; no osteoporosis, just osteopenia.
The medical field is still working on coming up with treatment without so many side effects, but it is all we have. My best to you💞

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Hello guys I haven't been on for a bit update from me had a really bad few weeks the doctor upped my dosage back to 10 mlg calmed the pain down a bit my biggest problem are my hands the last 8 weeks been a nightmare morning's not worth talking about the pain in my fingers both hands excruciating I don't know if it's arthritis or related to pmr or side effects from Presidolone once I have my tablets over the course of the day the pain starts to ease has anyone else experienced problems with theyre hands like myself if so perhaps you could tell me any tips how to deal with it I see my rheumatologist on July 19th for the first time and hopefully he can help me it's been a long 7 months so much pain to endure I just want to be pain free I even struggle to pick up a cup of tea or open a pint of milk in the morning but just have to crack on its a good job I have a very patient and understanding wife to help me if anyone has any tips on how to help my hands please feel free to help me believe me I could do with it cheers

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After going down from 15mg to 12.5mg after two weeks, I called to complain about breakthrough pain only to have the doctor convince me to stay on the lower dose. I called again yesterday because the pain had spread from my neck to my shoulders and lower back.
My doctor is out until July 11 because his wife had a baby. The nurse just said that was fine to increase to 15mg... eyeroll. I mentioned the main reason I called is that a refill would be needed sooner and to make a note in the file.
I made an appointment with another doctor at the clinic regarding the Tramadol he is reluctant to refill. We'll see how that goes. This is so not fun. I am nearly deaf and for some reason when talking to most people on the phone, I have to keep reminding them in the SAME conversation. I'm just tired and hope I can get a break sooner rather than later.

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