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.

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nyxygirl | @nyxygirl | May 31, 2023
In reply to @jonnydonny "I'm guessing I think that all my conversing is with people from across the pond the..." + (show)
@jonnydonny

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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@jonnydonny Head over to the discussion I started about can we make PMR funny ? There is a link to Patient perceptions about pain and stiffness from Great Britain- -I asked - would anyone in Great Britain think of "Ground Hog Day " to describe waking up : )

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alissahe | @alissahe | May 31, 2023

I use a paraffin bath for he pain in my hands. Works for me.

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marid57 | @marid57 | Jun 1, 2023
In reply to @bradninchgirl "What I read from the British National health web page, Mayo web pages and other PMR..." + (show)
@bradninchgirl

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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Totally agree!

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karupana | @karupana | Jun 1, 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

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https://www.medicalnewstoday.com/articles/321683
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nyxygirl | @nyxygirl | Jun 2, 2023
In reply to @walkamok "Thank you for your very helpful comments and the link to a relevant discussion. Yes I..." + (show)
@walkamok

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!

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@bfh3 I'm pinging you here so you check out this excel graph about split dose results ! @walkamok I DID show your graph to my young colleagues in the Lab, one is really good at excel : ) ! What is the second axis for your pain level ? I assume 1 -10.

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1 reply
walkamok | @walkamok | Jun 2, 2023

Yes, 1-10 for both pain level and daily mg. Is convenient!

It is actually a very simple spreadsheet. I would be happy to dress it up a little and email it to anyone who would like it. They could just erase my data, add theirs, and the chart will automatically redraw, extending and labeling axes as needed. I would have added it to my post but the Connect software will not allow it, probably due to IT security concerns.
Anyway, thanks for your interest!

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walkamok | @walkamok | Jun 2, 2023
In reply to @nyxygirl "@bfh3 I'm pinging you here so you check out this excel graph about split dose results..." + (show)
@nyxygirl

@bfh3 I'm pinging you here so you check out this excel graph about split dose results ! @walkamok I DID show your graph to my young colleagues in the Lab, one is really good at excel : ) ! What is the second axis for your pain level ? I assume 1 -10.

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As I think about it, additional columns of possibly relevant 😉 data suggest themselves for plotting on the same axes:
Hours of manual labor performed
Malted beverages consumed
Ounces of ice cream eaten after 9 PM
Hours spent researching PMR

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nyxygirl | @nyxygirl | Jun 14, 2023
In reply to @walkamok "Thank you for your very helpful comments and the link to a relevant discussion. Yes I..." + (show)
@walkamok

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!

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@vellen this is the post with one spreadsheet example @walkamok good afternoon - I was recalling your offer to send your excel template. This is my version using excel with three time periods - more like a heat map . It's a lot of work but worth It- with levels of fatigue I was experiencing would never have been able to recall all details about doses and pains levels.

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1 reply
walkamok | @walkamok | Jun 14, 2023
In reply to @nyxygirl "@vellen this is the post with one spreadsheet example @walkamok good afternoon - I was recalling..." + (show)
@nyxygirl

@vellen this is the post with one spreadsheet example @walkamok good afternoon - I was recalling your offer to send your excel template. This is my version using excel with three time periods - more like a heat map . It's a lot of work but worth It- with levels of fatigue I was experiencing would never have been able to recall all details about doses and pains levels.

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

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2 replies
nyxygirl | @nyxygirl | Jun 14, 2023
In reply to @walkamok "You are clearly having a very rough time. Is the prednisone not working?" + (show)
@walkamok

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

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Ha ha -- no please don't worry -- when increased to 30 mg ( not shown ) the enire heat map is green ! But I am tapering now - so might switch to graphing the data like you do !
It is @vellen who started another post about Breakthrough pain -- thank you so much for your concern . ; )

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