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.

Mentor
John, Volunteer Mentor | @johnbishop | May 30, 2023
In reply to @jonnydonny "Thanks for the reply means a lot cheers" + (show)
@jonnydonny

Thanks for the reply means a lot cheers

Jump to this post

I really agree with @marmak that you should see a rheumatologist, especially given that your primary care doc seems in the dark with how PMR affects people. Don't give up hope, it can be a struggle but you are not alone and hopefully you will start feeling better.

REPLY
sharonanng | @sharonanng | May 30, 2023
In reply to @jonnydonny "I have a steroid card and record every month my dosage the last 6 months have..." + (show)
@jonnydonny

I have a steroid card and record every month my dosage the last 6 months have deen a nightmare for me at 68 I was a fit as anyone you could meet fast forward to today and my body is wrecked to make matters worse I now have arthritis in both hands trying to manage both is a nightmare the pain is brutal at times no one has ever sat me down and advised me what to do the pmr is something I think I was the first patient my doctor had come across I personally think I have to see a specialist he thinks different all I'm asking for is some kind of help it concerns me the length of time I will be on steroids because of the side effects
Simple questions to ask like can i drink a glass of wine with my dinner or can i have couple of pints 1 day a week is it safe to drink or leave it alone completely I have to explore the net to get answers that's how I came across the mayo clinic yesterday at least you can communicate with people who have the same condition as myself for breakfast this morning I'm going to try weetabix as I read it was safe cereal or alpen Musli maybe you or someone else can tell me if I'm doing right cheers for taking the the time to read this

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I find your post very interesting since I was first diagnosed with PMR and then diagnosis was changed to inflammatory polyarthritis by my rheumatologist. I question this new diagnosis and suspect the arthritis is related to PMR. I continue to have muscle aches whenever I am still for even moments, and the arthritis in my hands is very frustrating. The muscle aches go away with movement, but my hands are swollen and hurt most of the time, especially in the morning. I am down to 3.5 mg of prednisone and am on hydroxychloroquine. I am not sure the hydroxychloroquine is helping the arthritis as my hands don't feel functional until the prednisone kicks in.
I have not been drinking any alcohol since my diagnosis in April of 2022 and do miss an occasional glass of wine with a nice dinner. However, I want the meds to work as well as possible so have made the decision not to drink.
I feel that I shouldn't continue to post on the PMR site, since my diagnosis has changed, but I still find help with the tapering and find the arthritis in the hands with many PMR folks interesting even if my rheumatologist thinks it's a totally separate issue.
One rheumatologist told me the muscle aches are not PMR as the aches would not go away in just a few minutes if it was PMR. It would instead take 45 minutes. Would love to hear comments from all of you, and thanks so much for sharing your journey.

REPLY
2 replies
DadCue | @dadcue | May 30, 2023
In reply to @sharonanng "I find your post very interesting since I was first diagnosed with PMR and then diagnosis..." + (show)
@sharonanng

I find your post very interesting since I was first diagnosed with PMR and then diagnosis was changed to inflammatory polyarthritis by my rheumatologist. I question this new diagnosis and suspect the arthritis is related to PMR. I continue to have muscle aches whenever I am still for even moments, and the arthritis in my hands is very frustrating. The muscle aches go away with movement, but my hands are swollen and hurt most of the time, especially in the morning. I am down to 3.5 mg of prednisone and am on hydroxychloroquine. I am not sure the hydroxychloroquine is helping the arthritis as my hands don't feel functional until the prednisone kicks in.
I have not been drinking any alcohol since my diagnosis in April of 2022 and do miss an occasional glass of wine with a nice dinner. However, I want the meds to work as well as possible so have made the decision not to drink.
I feel that I shouldn't continue to post on the PMR site, since my diagnosis has changed, but I still find help with the tapering and find the arthritis in the hands with many PMR folks interesting even if my rheumatologist thinks it's a totally separate issue.
One rheumatologist told me the muscle aches are not PMR as the aches would not go away in just a few minutes if it was PMR. It would instead take 45 minutes. Would love to hear comments from all of you, and thanks so much for sharing your journey.

Jump to this post

It doesn't have to be one or the other ... it can be both.

I was diagnosed with inflammatory arthritis at the age of 32. PMR was added on at the age of 52. My rheumatologist was quite certain about the PMR diagnosis however, having both inflammatory arthritis and PMR does confuse things. There are many people with both. Having one autoimmune disorder increases the risk of having another one.

I took prednisone for 12 years for PMR. Prednisone works well for inflammatory arthritis too. I think there are people diagnosed with PMR who actually have inflammatory arthritis and vice versa. Having both is possible too.

REPLY
grammy82 | @grammy82 | May 30, 2023
In reply to @jonnydonny "Thanks for the reply means a lot cheers" + (show)
@jonnydonny

Thanks for the reply means a lot cheers

Jump to this post

@jonnydonny Just a word of heart...I've been on steroids for three years....and you will taper down as the disease is managed. Everyone here can truly sympathize with.."What happened to me?" Have you looked at HealthUnlocked.com in the UK? Once you get on just look under hubs for the PMR/GCA group. Another resource for you! My best.💞

REPLY
jonnydonny | @jonnydonny | May 31, 2023
In reply to @sharonanng "I find your post very interesting since I was first diagnosed with PMR and then diagnosis..." + (show)
@sharonanng

I find your post very interesting since I was first diagnosed with PMR and then diagnosis was changed to inflammatory polyarthritis by my rheumatologist. I question this new diagnosis and suspect the arthritis is related to PMR. I continue to have muscle aches whenever I am still for even moments, and the arthritis in my hands is very frustrating. The muscle aches go away with movement, but my hands are swollen and hurt most of the time, especially in the morning. I am down to 3.5 mg of prednisone and am on hydroxychloroquine. I am not sure the hydroxychloroquine is helping the arthritis as my hands don't feel functional until the prednisone kicks in.
I have not been drinking any alcohol since my diagnosis in April of 2022 and do miss an occasional glass of wine with a nice dinner. However, I want the meds to work as well as possible so have made the decision not to drink.
I feel that I shouldn't continue to post on the PMR site, since my diagnosis has changed, but I still find help with the tapering and find the arthritis in the hands with many PMR folks interesting even if my rheumatologist thinks it's a totally separate issue.
One rheumatologist told me the muscle aches are not PMR as the aches would not go away in just a few minutes if it was PMR. It would instead take 45 minutes. Would love to hear comments from all of you, and thanks so much for sharing your journey.

Jump to this post

Thanks for your reply I'm waiting for a phone call this morning from my doctor
The last 4 weeks have been a nightmare for me the pain has returned with a vengeance and I can't take it any more 1 day last week I actually and not ashamed to say broke down and cried the pain was that bad my wife feels tottaly useless through no fault of hers she tries to help me but unless you've experienced this condition it hard to appreciate the pain I'm in I'm now at the stage of breaking point and I'm hoping they will send me to see a neurologist and hopefully a scan to see what's going on inside my body I've gone back over 6 months back to square 1 I just need to get it sorted what really helps me is I'm now able to talk to people who have been in my position have to see what the doctor says today thank you again for getting touch it means a lot

REPLY
1 reply
jonnydonny | @jonnydonny | May 31, 2023

The response from people has been excellent just to talk to people who understand makes it so much easier thank you

REPLY
jonnydonny | @jonnydonny | May 31, 2023
In reply to @bradninchgirl "A big yes on diet. The reason I had such a bad initial flareup was that..." + (show)
@bradninchgirl

A big yes on diet. The reason I had such a bad initial flareup was that I was eating almost exclusively Tomatoes, potatoes, pork chops, sausages, bacon, french bread, wine, sweets. When I eventually found out what I had done and change my eating habits I started to improve. This whole episode had been a life changing experience. I have had to learn to pull up my big girl panties and face up to doing what I really didn't want to do. Eat the foods I would never have done before and live with never eating my favorite foods ever again. And exercising, but based on your post I will get back to doing it again. Thanks.

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Can you give me few tips on the change of diet example
For breakfast I read I can eat
Wheatabix or
Alpen Musli would that be right then for lunch and dinner that's where a bit of help would come hand I don't think I have been eating properley have to get my act together cheers

REPLY
2 replies
jonnydonny | @jonnydonny | May 31, 2023

Spoke to my doctor this morning going to push to get me asap to see
Rheumatologist then hopefully sort the problems if anyone has any little tips that could perhaps help me Improve myself please feel free to pass on to me I'm only a novice so will take on board any advice can get cheers

REPLY
jonnydonny | @jonnydonny | May 31, 2023
In reply to @jonnydonny "Thanks for your reply I'm waiting for a phone call this morning from my doctor The..." + (show)
@jonnydonny

Thanks for your reply I'm waiting for a phone call this morning from my doctor
The last 4 weeks have been a nightmare for me the pain has returned with a vengeance and I can't take it any more 1 day last week I actually and not ashamed to say broke down and cried the pain was that bad my wife feels tottaly useless through no fault of hers she tries to help me but unless you've experienced this condition it hard to appreciate the pain I'm in I'm now at the stage of breaking point and I'm hoping they will send me to see a neurologist and hopefully a scan to see what's going on inside my body I've gone back over 6 months back to square 1 I just need to get it sorted what really helps me is I'm now able to talk to people who have been in my position have to see what the doctor says today thank you again for getting touch it means a lot

Jump to this post

As I mentioned spoke to my doctor I was on
8m
From today she has put me back up to 10m
For 2 wks the
9 m for 2 wks then back on to 8m for 4 wks
See how things go fingers crossed cheers

REPLY
bradninchgirl | @bradninchgirl | May 31, 2023
In reply to @jonnydonny "Can you give me few tips on the change of diet example For breakfast I read..." + (show)
@jonnydonny

Can you give me few tips on the change of diet example
For breakfast I read I can eat
Wheatabix or
Alpen Musli would that be right then for lunch and dinner that's where a bit of help would come hand I don't think I have been eating properley have to get my act together cheers

Jump to this post

What I read from the British National health web page, Mayo web pages and other PMR articles is this: Keep away from processed food, eat gluten free which means nothing with wheat in it, stay away from nightshade vegetables that's potatoes, tomatoes, egg plants and peppers. nothing with vinegar in, no fermented items, no pickles, no wine or alcohol. No pork in any form, and only hormone and antibiotic free chicken, grass fed beef.

Eggs, fish and cheese, thank goodness, are OK. What seems to make pain worse is the additive in modern food. The down side is pretty much everything has to be cooked from scratch and without those nightshade veggies is pretty tasteless. I have a few recipes that might be helpful. When I get a minute I'll post them here. It sounds daunting but it is workable.

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