1. < Polymyalgia Rheumatica (PMR)

Some days are better than others

Posted by pkalkstein @pkalkstein, Jul 17, 2023

This morning I guess medication, diet, and sleep all aligned, and I had no feeling of polymyalgia at all. So rare and wonderful.

Three PMR Patients under a Tree

"O frabjous day! Callooh! Callay!
My PMR has gone away!
I can work and I can play!"

"Oh, has it gone away to stay?"

"Alas, good friends, the answer's 'Nay.'
The nasty bug does what it may,
It loves, it loves to make us pay
Whenever from pred's path we stray."

"Then let us take it day by day,
And thus at last perhaps we'll say
It's really gone--at last, HURRAY!"

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

marymckeith | @marymckeith | Jul 20, 2023

Waiting for the day when I feel better. Getting discouraged but trying hard. So many side effects. For 2 months it worked great on 20mg. Then I started to taper. Now back to 20 till August.

REPLY
1 reply
sandiw77 | @sandiw77 | Jul 21, 2023
In reply to @marymckeith "Waiting for the day when I feel better. Getting discouraged but trying hard. So many side..." + (show)
@marymckeith

Waiting for the day when I feel better. Getting discouraged but trying hard. So many side effects. For 2 months it worked great on 20mg. Then I started to taper. Now back to 20 till August.

Jump to this post

@marymckeith, I am exactly with you. I was prescribed Kevzara but have just learned that I cannot continue so I’m back to a slow taper from 20 mg starting August 1. Praying that our breakthrough is just around the corner!

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1 reply
maggie14 | @maggie14 | Jul 21, 2023

Love this! So great to bring some humor in.😊😊

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marymckeith | @marymckeith | Jul 21, 2023
In reply to @sandiw77 "@marymckeith, I am exactly with you. I was prescribed Kevzara but have just learned that I..." + (show)
@sandiw77

@marymckeith, I am exactly with you. I was prescribed Kevzara but have just learned that I cannot continue so I’m back to a slow taper from 20 mg starting August 1. Praying that our breakthrough is just around the corner!

Jump to this post

Hope everything works out for both of us. The tapering is hard.

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1 reply
froehlich22 | @froehlich22 | Jul 21, 2023
In reply to @marymckeith "Hope everything works out for both of us. The tapering is hard." + (show)
@marymckeith

Hope everything works out for both of us. The tapering is hard.

Jump to this post

Yes I have tried it 3 times in the last year. No success. I’m just getting fat basically.

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1 reply
sandiw77 | @sandiw77 | Jul 22, 2023
In reply to @froehlich22 "Yes I have tried it 3 times in the last year. No success. I’m just getting..." + (show)
@froehlich22

Yes I have tried it 3 times in the last year. No success. I’m just getting fat basically.

Jump to this post

Me too on the getting fat part—but we are going to get this thing turned around!

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pkalkstein | @pkalkstein | Jul 23, 2023

Years ago, when I was on long-term dexamethasone, I developed the familiar "moonface" and chubby middle, which went away weeks after the steroids stopped. But this time I am countering the effects of prednisone with berberine and so far (seven months) it has prevented that typical effect of prednisone. You might want to look into berberine.

REPLY
1 reply
bohobama | @bohobama | Jul 25, 2023
In reply to @pkalkstein "Years ago, when I was on long-term dexamethasone, I developed the familiar "moonface" and chubby middle,..." + (show)
@pkalkstein

Years ago, when I was on long-term dexamethasone, I developed the familiar "moonface" and chubby middle, which went away weeks after the steroids stopped. But this time I am countering the effects of prednisone with berberine and so far (seven months) it has prevented that typical effect of prednisone. You might want to look into berberine.

Jump to this post

Love the poem! “Oh frabjous day”has been one of my catchphrases since my children were small. 😁

REPLY
bohobama | @bohobama | Jul 25, 2023

How many mg per day of Berberine?

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1 reply
pkalkstein | @pkalkstein | Jul 25, 2023
In reply to @bohobama "How many mg per day of Berberine?" + (show)
@bohobama

How many mg per day of Berberine?

Jump to this post

I try to take 500mg before each meal. Sometimes I forget! In one trial 1500/day was specified.

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