1. < Polymyalgia Rheumatica (PMR)

Newly Diagnosed with PMR: Anyone 51 or had it a long long time?

Posted by lisa73 @lisa73, Jul 8 11:09pm

Lots of Quesrions

I was diagnosed in February just before my 51st bday - I have had Symptoms for prob 15 yrs. Is there anyone who have had it long long time but never determined PMR?? or my age?

Lisa

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

jlo2252 | @jlo2252 | Jul 12 7:08am
In reply to @ruth77 "How does one manage no weight gain while on prednisone? I am on 5 mg and..." + (show)
@ruth77

How does one manage no weight gain while on prednisone?
I am on 5 mg and tapering down from 15.
I do not want any weight gain. Is it possible to avoid?

Jump to this post

It is hard because prednisone does stimulate your appetite and then you eat more!
As you start tapering it does get better and you can lose some weight. Just be careful with what you are eating! My problem has always been with carbohydrates- I love those cookies and donuts!
Try and substitute protein snacks or some fruit, just not too much. Your doctor may have some ideas for you. This is just what worked for me.
Good luck!

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formerpaa70 | @formerpaa70 | Jul 17 8:54am
In reply to @dadcue "PMR was diagnosed when I was 52 years old but it started when I was 51...." + (show)
@dadcue

PMR was diagnosed when I was 52 years old but it started when I was 51. There was some confusion about my diagnosis because I was diagnosed with inflammatory arthritis with uveitis at the age of 32. The confusion according to my GP at the time was because I was " like a crazy person that wanted prednisone." He apologized after PMR was diagnosed by a rheumatologist and said he thought it was PMR when he first met me. That was why he prescribed prednisone in the first place.

The problem was a rheumatologist initially said it was a flare of inflammatory arthritis. I don't blame anyone because I had a 20 year history of inflammatory arthritis and uveitis. My presentation was very complicated until a rheumatologist requested that I stop taking prednisone and come back to see her. I was only able to stop taking prednisone for two days before my next visit a week later. There were three rheumatologists at that visit and they all agreed that I had PMR.

I asked what happened to inflammatory arthritis. A rheumatologist said I still had inflammatory arthritis. Then she said it was "unfortunate" but now I had PMR in addition to inflammatory arthritis. She said once you have one autoimmune disorder it increases the risk of having another autoimmune disorder.

I have multiple autoimmune disorders. I took prednisone for 12 years to treat PMR. My rheumatologist referred to it as "systemic inflammation." I finally got off prednisone when a biologic was tried that targeted PMR. Technically, I still have PMR but the biologic controls it far better than prednisone ever did.

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Pls share which biologic

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1 reply
DadCue | @dadcue | Jul 17 9:09am
In reply to @formerpaa70 "Pls share which biologic" + (show)
@formerpaa70

Pls share which biologic

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Actemra (tocilizumab) is FDA approved for GCA.

Kevzara (Sarilumab) is FDA approved for PMR.

Both these biologics "might work" for PMR or GCA according to my rheumatologist. There is no guarantee either one "will work."

I was given Actemra for PMR with the understanding that I would be treated "as if" I had GCA.

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jlo2252 | @jlo2252 | Jul 18 7:42am
In reply to @eby "I have the same question... I am already overweight :-( and do not want to gain..." + (show)
@eby

I have the same question... I am already overweight 🙁 and do not want to gain any more or have facial changes . Is it possible?

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The facial changes (“moon face”) usually happen at higher doses.
As you taper off the prednisone this will go away. The weight should be easier to lose as you taper. When you first go on prednisone your appetite is stimulated and you feel hungry all the time. Snacking on healthy foods helps—stay away from those bad carbs (cookies! Donuts! Cake! Too much bread! ) I only had weight gain and moon face at higher doses (40-60 mg) when I was treated for my asthma, not my PMR.
Good luck on your health journey!

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nyxygirl | @nyxygirl | Jul 23 7:38am

@lisa73 good morning Lisa. I'm just curious - could tell us briefly what was ruled out in all these many years you have had pain ? I'll mention two things that had come up in conversations when I was trying to increase awareness among friends and relatives about PMR :
1) Vitamin D deficiency ? When my boss told his parents I had a PMR Dx last April 2023, his mother remarked that they thought his sister had PMR ! But she is young ( < 50) and turned out the vitamin D was the issue. My boss remarked he had never heard of PMR and heard about it twice in one week!

2) hemochromatosis - a coworker's wife immediately asked if I had HIGH Iron ! Even thought this disease has a genetic-mutation component, the symptoms do not occur until adulthood. Recently my cousin's daughter has been Dx. So because of my coworker's wife, I actually knew what this was !

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