1. < Polymyalgia Rheumatica (PMR)

symptoms present but lab markers aren't high

Posted by nutwife007 @nutwife007, Sep 3 12:09pm

Hi! Recently diagnosed or at least leaning in the direction of PMR around March of this year. Did like most, got on Prednisone 20mg and felt great after a week so stayed on that dose then tapered. Currently on 3.5mg but my symptoms started to return at 7 or 8 mg and have been checking my inflammatory markers but they are only mildly increasing and still in "normal" range which my rheum then kind of figures it isn't my PMR . I am frustrated so wondering if anyone else has had within normal ranges in blood work but was symptomatic.

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

DadCue | @dadcue | Sep 15 6:41pm
In reply to @tls4 "Yes, I have PMR (and now GCA as well.) My 2 inflammatory markers were never raised—this..." + (show)
@tls4

Yes, I have PMR (and now GCA as well.) My 2 inflammatory markers were never raised—this is true of up to 20% of PMR sufferers—markers are in normal range. Thst said, around 7 mg. is when your adrenal glands begin to start working again, and this can take awhile. You should not reduce when you are feeling pain because you are just encouraging the build up of inflammation and pain again. Experts who really know about PMR advise that you go back up to the dose where your symptoms were last relieved and then reduce much more slowly. This is the very best organization for info and support:
https://pmrgca.org.uk/
and they have a forum on Healthunlocked.com with knowledgeable volunteers to help you!

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"Experts who really know about PMR advise that you go back up to the dose where your symptoms were last relieved and then reduce much more slowly."
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This doesn't help you get off prednisone very quickly. Symptoms may not be caused by PMR/GCA. Symptoms may be caused by adrenal insufficiency because arthalgia and myalgia are also symptoms of adrenal insufficiency. Your symptoms might be something else entirely because a rheumatologist might say you don't have PMR anymore. It may be a combination of things.

How do volunteers on an internet website know what is going on if they don't even know your medical history or do a face to face medical examination? They can't even check your inflammation markers let alone know how much Prednisone a person should take.

I would rather take my rheumatologist's advice but that would be my personal preference.

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Tammy S. | @tls4 | Sep 15 7:02pm
In reply to @dadcue ""Experts who really know about PMR advise that you go back up to the dose where..." + (show)
@dadcue

"Experts who really know about PMR advise that you go back up to the dose where your symptoms were last relieved and then reduce much more slowly."
--------------------------
This doesn't help you get off prednisone very quickly. Symptoms may not be caused by PMR/GCA. Symptoms may be caused by adrenal insufficiency because arthalgia and myalgia are also symptoms of adrenal insufficiency. Your symptoms might be something else entirely because a rheumatologist might say you don't have PMR anymore. It may be a combination of things.

How do volunteers on an internet website know what is going on if they don't even know your medical history or do a face to face medical examination? They can't even check your inflammation markers let alone know how much Prednisone a person should take.

I would rather take my rheumatologist's advice but that would be my personal preference.

Jump to this post

Unfortunately there are some very ignorant rheumatologists out there. For example, the first one I was referred to did not believe I had PMR because my inflammation markers were not raised. He apparently was ignorant of the fact that up to 20% of people with PMR do not have raised inflammation markers.
That said, it very well could be adrenal insufficiency as you say.
But PMR goes into remission at different times (years) for different people, and some people never experience remission. In those cases it must be managed long-term with the lowest possible effective dose of prednisone or a biologic drug.

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patrish3 | @patrish3 | Sep 15 7:08pm

It was similar for me. A six month odyssey of worse and worse muscle pain made me more and more sedentary. My primary doc suspected PMR, but my inflammatory markers were all normal. I started a trial of prednisone (20 mg) which was an instant cure and gave me my life back. Her experience is that the markers are limited and if the prednisone works, that is proof of the disease.
I tried to taper twice and ignored the pain until it flared up too much to stand. I went back up and started the tapering regimen suggested in some posts here that is working so far. I am now at 3mg moving to 2mg. It takes about 2 months to drop 1mg.

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