Chronic Fatigue while tapering Prednisone for PMR

Posted by macadoo @macadoo, Aug 6, 2022

I’ve had PMR since April 2020. I started on Prednisone 20 mg/day and at 18 months, I had gradually reduced to 7 mg/day. When I tried to reduce to 6.5 mg/day, I had a terrible flare up so went back up to 10mg then tapered down to 7mg where I currently am. For the past 6 months, I’ve had terrible fatigue that has gotten worse. I’m extremely tired and feel like I have a hangover (I don’t drink) most of every day and need to ‘nap’ for 4-6 hours/day.
I’ve been tapering prednisone very gradually…going down .5 mg every six weeks. When I get to 6.5, my flare ups and intense pain returns.
My rheumatologist wants me to start Methotrexate. I’ve been avoiding taking it, but I will give in and start it in a few weeks.
Has anyone had chronic fatigue while they are reducing their steroid daily dosage and found any treatment to help with the fatigue?
I appreciate any of your advice and experiences.

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

Yes, the fatigue is heartbreaking for me. It affects everything. I’m doing z very very slow taper . Curfro on 14 mg alternating with 15mg for two weeks . The I will go to 14mg daily for two weeks. Then my plan is to go to alternating 14mg and. 13’g. And so on . That’s been working pretty well. But now I’m being tested for Myasthenia Gravis. I find out next week. I’m freaked out!

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@suemce

I was diagnosed with PMR 18 months ago. I am now on 3mg. During that time I have definitly felt fatigue where I just had to sit down and not do anything. It is better now than it was. But if there is some activity I have not done in awhile I now question whether I will have enough energy to complete the activity. It feels strange not to "trust" my body anymore. I hope this will pass!
I really appreciate the Connect group. It is really helpful to hear others experiences. Thank you

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I completely agree with your assessment of fatigue. I have gone from a high energy "get it done" person to someone who pre-gauges a situation to wonder if there will be a seat available and can I leave a social engagement early so I can go home and nap! I used to enjoy driving long distances and now seem to have lost confidence because I sometimes seem to be in a kind of "fog". Fortunately I am retired, but I wonder how many people with PMR have had to take an early retirement or even apply for disability. Yes, you are right about this group being such a mine of information All rheumatologists should be required to join and read the comments on a regular basis!

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I hope that the fatigue rights itself. So sorry for the potential of additional disease.

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I have terrible morning fatigue from arising in the morning till approximately noon at which time I begin to feel much better. Currently, I have wind down from approximately 20 mg of prednisone a day to 5 mg. I recently got down to 2 mg a day but had to bump it back up to 5 mg. When I was on 20 mg a day I did not have this morning fatigue. I’m wondering if anyone else has experienced this or has thoughts about this?

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@pjnewm

I have terrible morning fatigue from arising in the morning till approximately noon at which time I begin to feel much better. Currently, I have wind down from approximately 20 mg of prednisone a day to 5 mg. I recently got down to 2 mg a day but had to bump it back up to 5 mg. When I was on 20 mg a day I did not have this morning fatigue. I’m wondering if anyone else has experienced this or has thoughts about this?

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Welcome @pjnewm, I did not experience a lot of fatigue when I was tapering down on prednisone for my two occurrences of PMR but I believe others have. You will notice that we moved your post to an existing discussion on the same topic here:
-- Chronic Fatigue while tapering Prednisone for PMR: https://connect.mayoclinic.org/discussion/chronic-fatiguewhile-tapering-prednisone-for-pmr/,
so that you can connect with @annettetompkins, @gagapapa, @bcarr54 and others that also have experienced fatigue when tapering with prednisone.

Have you discussed it with your doctor or rheumatologist to see if maybe you are tapering down to quickly or at too large of a dose?

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Thanks for the reply. I have discussed this with my rheumatologist. I’ve been on 5 mg for a while then morning fatigue started worsening. I was wondering if it was a prodromal sign of a another PMR flare

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The fatigue sometimes is so bad that I barely make it to the bed. But, as I am tapering down from 80 mg to 15 mg I am finding that I do not experience the fatigue as much now. Every time I taper I never know what will happen. Hang in. The best to you.

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@tillysam

The fatigue sometimes is so bad that I barely make it to the bed. But, as I am tapering down from 80 mg to 15 mg I am finding that I do not experience the fatigue as much now. Every time I taper I never know what will happen. Hang in. The best to you.

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My tapering has been similar - hard to know how difficult it maybe. I have tapered from 40 to 3mg in the last 1 3/4 years - and sometimes it has been easier than others. Right now I am trying to get down to two, but forgot to take my evening dose of 1mg once or twice - and I had a little bit of a flare up.

Quick question, have either one of you dealt with having to go to the bathroom an excessive amount - a lot of times urgently?

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@tillysam

The fatigue sometimes is so bad that I barely make it to the bed. But, as I am tapering down from 80 mg to 15 mg I am finding that I do not experience the fatigue as much now. Every time I taper I never know what will happen. Hang in. The best to you.

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Thanks for your input

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I'm currently at 7.5mg and first noticed a slight drop in energy at 8mg, which I dismissed as a passing thing. The fatigue is worse now and my daily habit of doing something several times every day in the garden is feeling almost impossible right now.

The new tiredness is frustrating. And I've just noticed that my daily recording of blood pressure has all the wrong dates for the last week and I've had to change them. The brain seems to be fogging up as well. How usual is lethargy with reductions and at what reduction dose is it most likely?

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