1. < Polymyalgia Rheumatica (PMR)

I’m just wondering how old most of you are with PMR

Posted by alexander7757 @alexander7757, Apr 25 9:35pm

I am 59, but started having PMR symptoms for about 4 years. I still do not have an official diagnosis, but it just started one day when I woke up. It’s so bad for me that I can’t get out of a chair, dress myself . I’m too old to get disability. The symptoms just stop one day and it seems that it’s more of a winter thing for me. I seem like I’m in remission when I started working days, after a decade of working nights. Recently we’ve had a few storms come through and I am in a flare again. I took my first dose of Kevzara today.
Anyone here get PMR at my age. The doctors here think I’m too young for PMR?
I’m so confused and worried about my future. I either have very severe suffering or I have to take 10 mg of Prednisone every twelve hours and nothing different will help me?
I am desperate and looking for answers

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sandiw77 | @sandiw77 | 3 days ago

Hi Alexander7757,
I am 65, was diagnosed 3 years ago.

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jeff97 | @jeff97 | 3 days ago
In reply to @megz "Sounds like you would be taking a big risk going cold turkey from 7mg prednisone to..." + (show)
@megz

Sounds like you would be taking a big risk going cold turkey from 7mg prednisone to none, with or without Kevzara. How much experience does your rheumatologist have with adrenal function and prednisone? For such an experiment, potentially at the expense of your health, why is it that the rheumatologist doesn't want to see you for 6mths? Alarm bells for me.

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I agree with @megz that the advice to stop prednisone when your dose is 7 mg per day is extremely dangerous. It could kill you!

I'm taking prednisone and Actemra, which is another biologic like Kevzara. My rheumatologist had me taper 1 mg every 2 weeks from 10 mg down to 5, and now I'm tapering 1 mg every month to get down to 0. The rheumatologist wants to allow plenty of time for my adrenals to recover.

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kare1 | @kare1 | 3 days ago

I just got diagnosis at almost 72! Out of the blue. A month & a half ago started prednisone which was a wonder drug. Within 2 days felt “normal”! Rheumatologist wants me to begin tapering off prednisone from 15 mg to 12.5 for 2 weeks then 10 mg for 2 weeks & start taking methotrexate. I just started this today (may 4). Because I have osteoporosis we understand prednisone is bad for our bones!

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janetilley | @janetilley | 3 days ago
In reply to @tweetypie13 "Been on Kevzara 5 weeks, SED and CRP are all normal. First time since my initial..." + (show)
@tweetypie13

Been on Kevzara 5 weeks, SED and CRP are all normal. First time since my initial diagnosis a year ago. At 7 mg Pred. My rheumatologist told me to “STOP, all now and use Tylenol for arthritis for discomfort, come back in 6 months”. I don’t know anyone who’s gone cold turkey, and not tapered. I plan to taper. Anyone go cold turkey?

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Never go cold turkey! Very disruptive to your system. Taper essential.

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tweetypie13 | @tweetypie13 | 3 days ago

Thank you everyone for input on Cold Turkey.
I’m grateful for this group.
Sadly, we have to be our own patient advocate.
And the Drs. need to “listen” more. They have short appt times and it’s become slam bam thank you mam.

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kathleendw | @kathleendw | 3 days ago

Diagnosed 6 weeks ago at 71. I'd always been pretty healthy so it was a hard slap but I remind myself that there are many people with worse illnesses who would gladly switch places with me. It's all about perspective.

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briand3960 | @briand3960 | 3 days ago

I was first diagnosed at 61 and it took me about 20 months of a prednisone taper to get off. I was in remission for three years and now I’ve just had a flare. Thankfully, it has been more mild and I’m taping prednisone much quicker with minimal symptoms.
I hope the Kevzara will really help you to reduce prednisone and get off it completely.

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douglwuoregonedu | @84606eugene | 2 days ago

I was diagnosed at 65. I am male with a Scandinavian (Danish) heritage.

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douglwuoregonedu | @84606eugene | 2 days ago

Have you talked to your rheumatologist about Kevzara ?

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hollycook | @hollycook | 2 days ago

I was diagnosed at 72, began 20mg Prednisone…one year later, now 73 and currently at 7 mg, continuing to taper monthly.

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