1. < Polymyalgia Rheumatica (PMR)

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.

kmeikle1 | @kmeikle1 | Aug 4, 2022
In reply to @elizabethjoan "Hi. I am new to PMR...diagnosed July 12. I take my prednisone at 9:30 and find..." + (show)
@elizabethjoan

Hi. I am new to PMR...diagnosed July 12. I take my prednisone at 9:30 and find it does not really take effect until about 1pm. It wears off by 4 am. I then take ibuprofen and acetaminophen to get me through the night and allow me to get up in relative comfort in the morning. My blood pressure is fine.
Does anyone else supplement with OTC's? Is this an OK thing to do?

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@elizabethjoan I've been advised not to take ibupofen while I'm taking prednisone both by my rheumy and the info that comes with my prescription. I do limit it, but once in awhile I need additional relief and take two.
I've also heard that we should take prednisone between 3 and 4 a.m. I don't do that, but understand the reasoning. Some people who don't get 24 hour relief from prednisone split their dose.

REPLY
1 reply
elizabethjoan | @elizabethjoan | Aug 5, 2022
In reply to @amandaa "Hi @elizabethjoan and welcome to Mayo Clinic Connect. I moved your post to this discussion: PMR..." + (show)
@amandaa

Hi @elizabethjoan and welcome to Mayo Clinic Connect.
I moved your post to this discussion:
PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/
So that you can connect with others dealing with your same issue.

Here is one other you might like to read:
Prednisone tapering is hard: Do complementary therapies help?: https://connect.mayoclinic.org/discussion/prednisone-tapering/

Did you ask your physician if it was ok to supplement with OTC's?

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Spoke to my GP yesterday about my waking up at 4 am with pain and stiffness. She advised that I take two 500mg Tylenol at bedtime. I did this last night and it really helped. Woke at 6 with slight pain in one arm….not requiring any OTC.

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maryft | @maryft | Aug 5, 2022
In reply to @kmeikle1 "@maryft Oh my! You've really paid a price in dealing with your PMR. I'm sorry to..." + (show)
@kmeikle1

@maryft Oh my! You've really paid a price in dealing with your PMR. I'm sorry to hear this. I was put on a generic fosomax after taking a bone density test early on. Do you still struggle with PMR? Thank you for sharing your experience. Hopefully many will read this and take preventive steps. Very important.

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I believe I'm in remission from PMR, although I have days when I hurt quite a lot, and then I question whether or not that's true. You are fortunate that your doctor did the bone density and put you on fosomax early on; perhaps that should be part of the treatment for everyone. I'm disappointed my rheumatologist didn't do that because, as you said, I've really paid the price! Take care!

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flymetothemoon | @flymetothemoon | Aug 6, 2022
In reply to @maryft "kmeikle1, I did wean off the prednisone, after being on it one year, and I will..." + (show)
@maryft

kmeikle1,
I did wean off the prednisone, after being on it one year, and I will never go back on it. I was Osteopenic when I started on prednisone, a very active 77 year old, and am now full blown with Osteoporosis! I suffered a fractured rib and a fractured vertebrae, in two separate incidents this year, plus had almost every prednisone side effect listed. I also ended up having cataract surgery!! It's my understanding that prednisone is the only known medication that relieves PMR, but I had no clue what an impact it could, and did, have on my body. People react differently to meds, but I would strongly suggest anyone being on it have a bone density test!!! Currently, I'm listed as high risk for fractures and will need to do daily injections (in my stomach), for 2 years, to rebuild my bone. These injections will cost me +$500 a month, out-of-pocket, unless I can qualify for assistance from the pharmaceutical company. I've been advised by my endocrinologist that I seriously need to do this. My objective here is to make people aware of the importance of bone testing if they're on prednisone long term!! I t is critical!

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I've been on the Prednisone for 3 years and tapering for second time. I've been treating the bones with Reclast infusions once a year for 3 consecutive years. I will have my third in March. My Rheumatologist and Endocrinologist are managing my bones. I walk a lot and take calcium pills. My husband is an Ophthalmologist and examines me frequently but was more concerned in the beginning of my diagnosis with a stroke or blindness than cataracts. I have aches and pains all over but still get out and walk 4 to 5 miles 5 days a week. It keeps bones strong.

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suetex | @suetex | Aug 6, 2022
In reply to @margaretva "I was put on 12 - 15 mg pred almost a year ago - told to..." + (show)
@margaretva

I was put on 12 - 15 mg pred almost a year ago - told to take 15mg on days I anticipated being more active, but target dose was 10 mg. Being on pred was a revelation as my horrible PMR pain was gone, and I was able to enjoy the hiking trip my husband and I had planned for our 35th wedding anniversary. I am grateful my husband found this site, as my rheumatologist seemed a little cavalier about changing dose according to pain or activity level. I read here - mostly thanks to Mentor John - that one needs to reduce gradually. So after initial euphoria over pain reduction and getting my life back, I have now reduced 1/2 mg at least a week at a time to 2.5 with little trouble. I also take methotrexate once a week. My doc tried me on Humira as he didn't think I was getting below 7 mgs of pred soon enough (this was maybe 8 months in). Did OK on it for 2 months - though injecting myself was bizarre - but when I had the pred down to 3.5 I had a terrible injection site reaction to the Humira. Pharmacist and Rheum thought perhaps reaction had been masked by higher pred doses. So no more Humira! We weren't sure it was helping anyway. The last couple of 1/2 mg increment reductions, I have actually gone down by 1/4 for 2 days (tough to split the 1 mg tabs Mentor John recommended into 4, but I do it for a couple of days). Rebound pain is real if I taper too quickly, and it's not a return of PMR pain. Pred rebound pain happens in different places for me than PMR pain - worst in my hands. I also read here - but didn't heed sufficiently! - that we can overdo with sports while on pred. That's been my biggest problem lately = all the strains and stresses I did without realizing it. I can't listen to my body with pred silencing any pain! So I wouldn't back off for a day or 2 as I normally would, if I had overdone a little one day. (I hike, bicycle, and am a competitive equestrian in dressage). So don't overdo as I did! Thank you to Mayo and our volunteers - super helpful info here!

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Yea, a fellow equestrian! I am working so hard at just trying to stay in the saddle and figure out what is over use pain, out right injury and PMR pain. For me the PMR indicator is turning out to be my biceps. When PMR first showed up, I went from picking my 35lb western saddle on to my horse's back with no problem to not be able to (Pain!) in one week. (I ride both english and western. ) I knew something was wrong. Legs were just weird and I have never been very limber. Took me way too long to find a Rheumy who could diagnose it. I'm wondering- did anyone else have ANAs done? My SSDNA was way high but everthing else in normal range. Seems like it would mean something. Right now, I have developed a real affection for cold packs for my hip bursitis. They really help. And knowing how much to take on is a real trick. And MSM, please everyone, take a look at that. It's the real deal and no side effects.

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sharonanng | @sharonanng | Aug 6, 2022

I have been taking 15 mg of Prednisone in the morning and continue to have tolerable but heading to intolerable pain in shoulders and upper arm muscles and neuropathy in hands, much worse in mornings. Tried spacing the Prednisone yesterday as suggested by my rheumatologist. Took 10 mg in AM and 5 mg at 3 PM. Made a noticeable difference both yesterday evening and this morning and did not interfere with sleep. Hopeful and grateful.
Love this site. Thank you Mayo Clinic and all of you who share your stories.

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flymetothemoon | @flymetothemoon | Aug 6, 2022
In reply to @kmeikle1 "@elizabethjoan I've been advised not to take ibupofen while I'm taking prednisone both by my rheumy..." + (show)
@kmeikle1

@elizabethjoan I've been advised not to take ibupofen while I'm taking prednisone both by my rheumy and the info that comes with my prescription. I do limit it, but once in awhile I need additional relief and take two.
I've also heard that we should take prednisone between 3 and 4 a.m. I don't do that, but understand the reasoning. Some people who don't get 24 hour relief from prednisone split their dose.

Jump to this post

I would not take that with the Prednisone. I do understand pain is devastating, but take tylenol instead. I take the Prednisone as late as I can, and at times I forget and wake up in middle of night with pain and remember. Prednisone can irritate the stomach so I take a Pantoprazole at night.

REPLY
tillysam | @tillysam | Aug 6, 2022

My endocrinologist just changed me to Hydrocortisone from Prednisone (7mg). My neck, shoulders, upper arms , chest and hips are so painful. But, since I changed to the Hydrocortisone the pain seems to be much worse. I think I should go back to Prednisone and will have to hold a discussion with my doctor. Has anyone else ever experienced this?

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janiceem | @janiceem | Aug 6, 2022
In reply to @elizabethjoan "Hi. I am new to PMR...diagnosed July 12. I take my prednisone at 9:30 and find..." + (show)
@elizabethjoan

Hi. I am new to PMR...diagnosed July 12. I take my prednisone at 9:30 and find it does not really take effect until about 1pm. It wears off by 4 am. I then take ibuprofen and acetaminophen to get me through the night and allow me to get up in relative comfort in the morning. My blood pressure is fine.
Does anyone else supplement with OTC's? Is this an OK thing to do?

Jump to this post

When my PMR was bad, no medication helped, including opioids. I have a mild case, which only hurt me at night. I started at 10 mg. and am now taking 1 to 2 mg. daily for the past several months. Since prednisone can disturb sleep, I usually split my dosage and take half in the morning and half after dinner. Hope this helps.

REPLY
flymetothemoon | @flymetothemoon | Aug 7, 2022
In reply to @margaretva "I was put on 12 - 15 mg pred almost a year ago - told to..." + (show)
@margaretva

I was put on 12 - 15 mg pred almost a year ago - told to take 15mg on days I anticipated being more active, but target dose was 10 mg. Being on pred was a revelation as my horrible PMR pain was gone, and I was able to enjoy the hiking trip my husband and I had planned for our 35th wedding anniversary. I am grateful my husband found this site, as my rheumatologist seemed a little cavalier about changing dose according to pain or activity level. I read here - mostly thanks to Mentor John - that one needs to reduce gradually. So after initial euphoria over pain reduction and getting my life back, I have now reduced 1/2 mg at least a week at a time to 2.5 with little trouble. I also take methotrexate once a week. My doc tried me on Humira as he didn't think I was getting below 7 mgs of pred soon enough (this was maybe 8 months in). Did OK on it for 2 months - though injecting myself was bizarre - but when I had the pred down to 3.5 I had a terrible injection site reaction to the Humira. Pharmacist and Rheum thought perhaps reaction had been masked by higher pred doses. So no more Humira! We weren't sure it was helping anyway. The last couple of 1/2 mg increment reductions, I have actually gone down by 1/4 for 2 days (tough to split the 1 mg tabs Mentor John recommended into 4, but I do it for a couple of days). Rebound pain is real if I taper too quickly, and it's not a return of PMR pain. Pred rebound pain happens in different places for me than PMR pain - worst in my hands. I also read here - but didn't heed sufficiently! - that we can overdo with sports while on pred. That's been my biggest problem lately = all the strains and stresses I did without realizing it. I can't listen to my body with pred silencing any pain! So I wouldn't back off for a day or 2 as I normally would, if I had overdone a little one day. (I hike, bicycle, and am a competitive equestrian in dressage). So don't overdo as I did! Thank you to Mayo and our volunteers - super helpful info here!

Jump to this post

I also have pain in my hands. It is not that common. I ordered these comfortable wrist/arm braces from Amazon. They have cushions for the palms of hands and they help a lot. I walk about 20 miles a week, and I actually feel great while I am walking, but developed a stress fracture in my foot. Probably from the Prednisone. Challenging times. My husband sees many patients with this condition since it does affect the eyes. Keep up the good work with your exercise.

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