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.

etphnhome | @etphnhome | Jun 26, 2023
In reply to @tsc "Hi all. I do think it is best to seek out a rheumatologist for treatment of..." + (show)
@tsc

Hi all. I do think it is best to seek out a rheumatologist for treatment of this disease. My rheumatologist commented that many people are on high dosages of prednisone for way too long. PMR and GCA (Giant Cell Arteritis) are companion disorders. I've been diagnosed with both. GCA is more severe - so I was put on 40 mg. prednisone for two weeks, initially (given my size = about 100 lbs), then told to taper down by 5 mg. every two weeks, but if symptoms returned to go back up to the previous dosage. Luckily, I had no flareups while tapering down. I am now down to 10 mg. The doctor said to stay on this dosage for a month, then taper down by 2.5 mg for a month, etc. I do get a sense from reading posts that many people are left on their own to figure out tapering. Prednisone is such a powerful drug with so many side effects that it seems most doctors want to get patients down to the lowest dose possible to manage symptoms, and it is trial and error. We basically have to stay on prednisone until our immune systems calm down...and then it seems, they can get excited again. Cecil and Goldman's Textbook of Medicine states that "Steroid treated PMR + GCA are self-limited illnesses..." Eventually, they burn out, for some, sooner than later.

Jump to this post

GCA doesn't burn out

REPLY
Teri | @tsc | Jun 26, 2023

Hi @etphnhome, thank you for pointing this out. I found this in Cecil and Goldman's Textbook of Medicine's chapter on PMR and GCA:
"Steroid-treated PMR and GCA are self -limiting illnesses lasting 1 to 2 years in most patients. However, a subgroup of patients with both disorders can have active inflammatory disease as manifested by persistent symptoms and blood test signs of active inflammation for 7 to 10 years."
It then goes on to state that thoracic aneurysms with giant cells in the tissues can develop as long as 15 years after the diagnosis...
My rheumatologist told me to take low dose aspirin everyday to avoid this.

REPLY
tigre24 | @tigre24 | Jun 26, 2023
In reply to @barracudacool "Sugar for me. Too much triggers a flare. The biggest trigger? Stress." + (show)
@barracudacool

Sugar for me. Too much triggers a flare. The biggest trigger? Stress.

Jump to this post

Thanks… I’ll watch the sugar intake and see if it correlates! I’m trying to isolate the triggers… but the stress is the hardest… hard to measure in everyday life!
Seems lije O can have 2-3 good painless days then get sapped.. but can’t determine why… but maybe this is just the nature of the beast? Thanks for responding…really appreciate it… just new to this and trying to get a handle on things!

REPLY
1 reply
barracudacool | @barracudacool | Jun 26, 2023
In reply to @tigre24 "Thanks… I’ll watch the sugar intake and see if it correlates! I’m trying to isolate the..." + (show)
@tigre24

Thanks… I’ll watch the sugar intake and see if it correlates! I’m trying to isolate the triggers… but the stress is the hardest… hard to measure in everyday life!
Seems lije O can have 2-3 good painless days then get sapped.. but can’t determine why… but maybe this is just the nature of the beast? Thanks for responding…really appreciate it… just new to this and trying to get a handle on things!

Jump to this post

Yes it is hard. I keep a journal for food, exercise and stiffness, pain levels. Helpful to look back. But sometimes I just can’t move and don’t know what I did. Stress is more immediate. Fairly new to this as well. December 22….

REPLY
alissahe | @alissahe | Jun 28, 2023

Has anyone had an allergic reaction to prednisone that presented as a pronounced rash over much of the body? Not itchy or painful but unsightly?

REPLY
2 replies
mnmom1 | @mnmom1 | Jun 28, 2023

Hi,
I have been dealing with PMR for a while. Started on Prednisone 15 mg last July after figuring out the diagnosis of PMR. I am tapering off the prednisone as the side effects are causing me more issues than the PMR at this point. (Sleeplessness, crabbiness, wt gain if I don’t watch my weight, high blood sugar if I don’t watch my diet, those types of things) The prednisone has helped but time to get off if it. I started at 15mg and am down to 7 mg now tapering down 1mg per month. Tapering more than that can cause other issues so you must taper SLOWLY and under a Drs care.

I am finding high sugar in my diet seems to exacerbate the PMR systems, walking and arm exercises helps me with the stiffness. It’s a fine line though, if I exercise or do too much, then I pay the next day.

I find PMR to be frustrating at times, but I am progressing forward with the taper, watching my sugar intake, figuring out HOW MUCH activity I can tolerate and WHAT activity I can tolerate. Right now I do about 30 minutes a day, of walking and arm exercises depending upon the day. If I have too much stiffness to walk very far one day, then I make up the time by doing arm exercises while sitting, which helps the shoulder stiffness.

Because PMR is an inflammatory process, I found out the hard way that I need to be careful with repetitive activity as I developed a bursitis of my hip from too much gardening. Again I had to figure out HOW MUCH and WHAT type of activity I can do. Keeping my sugar intake down along with eating fruits and veg eatables helps too.

This is a long term challenge but I hope what I have found out and pass along to you will help.

Please discuss any diet, medication and exercise changes with your Dr. We are all different and what works well for one person may not work for another. Keeping track of pain is a plus too.

REPLY
vellen | @vellen | Jun 28, 2023
In reply to @alissahe "Has anyone had an allergic reaction to prednisone that presented as a pronounced rash over much..." + (show)
@alissahe

Has anyone had an allergic reaction to prednisone that presented as a pronounced rash over much of the body? Not itchy or painful but unsightly?

Jump to this post

No but ai have read about it, it's definitely an allergic reaction so call your doctor. Perhaps they will lower your dose or try something else. Call as soon as they open. If it gets worse or impedes your breathing, go to the ER or call 911. 999 in the UK.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jun 28, 2023
In reply to @alissahe "Has anyone had an allergic reaction to prednisone that presented as a pronounced rash over much..." + (show)
@alissahe

Has anyone had an allergic reaction to prednisone that presented as a pronounced rash over much of the body? Not itchy or painful but unsightly?

Jump to this post

@alissahe, I haven't had the rash symptoms but did find some information on them.

"Some side effects and what to expect from them include: Allergic Reactions: The most prevalent reactions are hives, skin rashes, itching, difficulty breathing, and swelling of the lips, tongue or face. If you experience any of these symptoms, contact an urgent-care provider or your local emergency room."
--- Prednisone Side Effects: https://www.drugwatch.com/prednisone/side-effects/

Have you talked to your doctor or rheumatologist about the rash? Did it start immediately after taking prednisone?

REPLY
alissahe | @alissahe | Jun 28, 2023

I actually asked for someone in my Facebook PMR support group. Her reaction started two days after she started on 10 mg of prednisone. She consulted her rheumatologist who took her totally off prednisone but, unsurprisingly , her PMR pain came back and in more places than previously.

REPLY
kurt25 | @kurt25 | Jul 3, 2023

I was diagnosed back in March with PMR put on prednisone been tapering down from 20 mg when I get to 10 mg the pain comes back and the prednisone doesn't seem to work that good has anybody else had this and have anyone tried other medications that have worked

REPLY
4 replies
View MoreView Less
Please sign in or register to post a reply.