PMR and exhaustion

Posted by ncgal @ncgal, Jan 11 12:56pm

I'm just curious to how many of you are down to 3 mg or less of Prednisone and feel about 90% pain free. My major complaint now is that I feel totally exhausted most of the time. I just had to change the sheets on the bed and then lay down for a half hour. Same when I take a shower and wash my hair. I've had PMR for almost 3 years now and was really hoping to get off the Prednisone within the next few months. I don't know if the exhaustion has to do with the PMR or something else. I would love to know if anyone else is experiencing the same thing with the low dose of Prednisone.

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

"Overwhelming fatigue" or "sheer exhaustion" with the slightest amount of activity was how I felt at lower doses of prednisone. There was a lesser degree of fatigue caused by PMR but that fatigue wasn't overwhelming as long as I took enough prednisone to control the pain. The fatigue at lower doses of prednisone was another magnitude of fatigue when compared to PMR fatigue.

Be very careful with this dose of prednisone after long term use. My rheumatologist wanted me to stay on 3 mg until I had an evaluation done by an endocrinologist. An endocrinologist determined that I had adrenal insufficiency caused by long term prednisone use.
https://www.sfadvancedhealth.com/contents/chronic-fatigue-adrenal-insufficiency
With patience and safeguards in place in case anything happened, I eventually got off prednisone.

If you google "secondary adrenal insufficiency caused by prednisone," there is a wealth of information on the topic.

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I have tapered to .5 mg of prednisone after being on it for more than 4 years since my PMR diagnosis. Starting Actemra 6 months ago had allowed this and has basically put me into remission. I am pretty much pain free, but exhaustion remains a huge problem. I sleep 10+ hours per day and still feel exhausted. My rheumatologist and I have discussed this and wonder if it might be due to long Covid which I have experienced since I was infected in July 2021. I lost my sense of smell then also that I have never recovered. I understand how debilitating exhaustion is. My heart goes out to you.

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@lmoross

I have tapered to .5 mg of prednisone after being on it for more than 4 years since my PMR diagnosis. Starting Actemra 6 months ago had allowed this and has basically put me into remission. I am pretty much pain free, but exhaustion remains a huge problem. I sleep 10+ hours per day and still feel exhausted. My rheumatologist and I have discussed this and wonder if it might be due to long Covid which I have experienced since I was infected in July 2021. I lost my sense of smell then also that I have never recovered. I understand how debilitating exhaustion is. My heart goes out to you.

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I have taken Actemra for the last 4 years. I got off prednisone about 3 years ago. It took approximately a year for the overwhelming fatigue and exhaustion to gradually improve after getting off prednisone. I'm still relatively pain free from PMR.

I have never tested positive for Covid. I did have a viral infection while on prednisone with PMR which wasn't good. I recovered but yes, it was a huge setback for me too. It took a long time to recover.

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Hi @ncgal, I see that you have already heard from @lmoross and @dadcue. I think you might also find this related discussion helpful to learn what others have shared.
— Chronic Fatigue while tapering Prednisone for PMR: https://connect.mayoclinic.org/discussion/chronic-fatiguewhile-tapering-prednisone-for-pmr/

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Fatigue has been recognized as a symptom of PMR. But when you get your prednisone down as low as you are, it is more than likely because your adrenal glands aren't going full swing yet. It can take about a year in some cases for your adrenal glands to get back to "normal". And in some cases, they might never come back fully, if at all. The best thing is to just not push yourself if that is possible. Allow your body to rest as much as possible, and not a lot of physical activity if it isn't necessary. It might not take a full year if you're lucky. And endocrinologist can do a test on you to see if your adrenals will be okay, and also how much they are currently functioning, if at all.

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Sad but true. It might be good to have your adrenals tested to see where you stand. Knowledge of what our bodies can be very helpful understanding what to expect.

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