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.

I was on prednisone since 8/22. My rheumatologist wanted me to taper off. In September I got down to 7.5 and then had a flare and went back up for a couple months. I have now been off prednisone for 2 1/2 weeks and I am always tired. I tried taking vitamin b12 and iron and don’t feel any difference. I feel as though this is my new normal. I have no energy at all 😞

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@saltyg

When my rheumatologist originally proposed doing it, it was about brain fog and fatigue, and being able to improve it. He literally said to me I'm gonna blow your mind if you're willing to try this, and I have to say the results are dramatic I can't say for sure what I may have needed, but in general the process is meant for you to absorb and process the nutrients you need better than you ever could just by eating or taking supplements. I am on prednisone and I did ask the IV nurse if she thought this could help me get off of it she said yes I'm a little dubious on that one, but I can't deny the improvement in my energy level and mental clarity.

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What's the process?

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@marid57

Turmeric causes terrible stomach pain for me.

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Turmeric is very high in oxalates which are bad for some of us. I stay away from it too. Many of the so-called "superfoods" are high oxalate and/or high lectin which cause various symptoms that most people don't associate with the current "superfood" or new supplement they are consuming.

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@tsharkey01

I was on prednisone since 8/22. My rheumatologist wanted me to taper off. In September I got down to 7.5 and then had a flare and went back up for a couple months. I have now been off prednisone for 2 1/2 weeks and I am always tired. I tried taking vitamin b12 and iron and don’t feel any difference. I feel as though this is my new normal. I have no energy at all 😞

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Prednisone has lingering side effects after we taper off. When I tapered off prednisone, having no energy lingered for more than a year. In my case, the low energy level was related to a low cortisol level.

Taking prednisone long term may affect your adrenal health. Tiredness and fatigue are often symptoms of adrenal insufficiency. This side effect of long term prednisone use may take months to improve. This particular side effect is why we need to taper off prednisone slowly.
https://www.verywellhealth.com/does-prednisone-tapering-minimize-withdrawal-190242

The other side of tapering off slowly is to take Prednisone for the least amount of time as possible. It is difficult to do both.

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I am tired all the time and feel like I am sleepwalking. Now on 10 mg of prednisone.

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On my pred, taper fatigue set in at about 10mg. As I tapered down to about 3 mg. it started lifting and now at 2 1/2 mg. I am feeling much more 'normal' for a 75-year-old. I hope it stays as I continue to taper. I am having tentative faith in my adrenals now, lol.

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@edwardh

On my pred, taper fatigue set in at about 10mg. As I tapered down to about 3 mg. it started lifting and now at 2 1/2 mg. I am feeling much more 'normal' for a 75-year-old. I hope it stays as I continue to taper. I am having tentative faith in my adrenals now, lol.

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No sense being "stressed out" about the adrenals. That would only increase a person's need for cortisol. When my cortisol level was running on empty, I had absolutely no energy at all.

I have faith that my adrenals are functioning but perhaps not at peak capacity. I can do vigorous exercise without any trouble for a 70-year-old. I just need to take a nap afterwards.

When my cortisol level was low, I was wiped out if I did anything at all. Not normal for a 60-year old. I felt like I was 100+ years old.

My own cortisol must be regulating my inflammation levels well because I don't need prednisone anymore.

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I was coping (just barely) with the pain at around 10mg Prednisone and able to do most of what i need to do on a daily basis to keep the family going. Then i started on Methotrexate 8 weeks ago, while reducing Prednisone by 0.5 every 4 weeks. I have been on a steady spiral of feeling worse week after week, most days flat on my back and in tears. Bugger that !!! no more Methotrexate, no more supplements (apart from D3, Calcium K2, and Vit C) ... i can deal with Prednisone and get off it eventually but no more prescribed poisons and dubious supplements 'to see if they might help' !!!!!!!

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I was diagnosed with PMR in December 2023 but the symptoms began in late August. The rheumatologist prescribed 10 mg of prednisone & it started relieving the symptoms almost immediately. I saw her again in January & she suggested I begin slowly tapering off to see how low a doseage I could tolerate. I have tapered down to 4mgs (for 3 days). There is some increased pain in my hands but it is definitely tolerable. The main change I notice is increased fatigue. Wondering if anyone else has experienced this.

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@jkristinsson2014

I was diagnosed with PMR in December 2023 but the symptoms began in late August. The rheumatologist prescribed 10 mg of prednisone & it started relieving the symptoms almost immediately. I saw her again in January & she suggested I begin slowly tapering off to see how low a doseage I could tolerate. I have tapered down to 4mgs (for 3 days). There is some increased pain in my hands but it is definitely tolerable. The main change I notice is increased fatigue. Wondering if anyone else has experienced this.

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Hello @jkristinsson2014, You are not alone with your increased feeling of fatigue while tapering off of prednisone. You will notice that we merged your post into an existing discussion on the same topic here so that you can learn what others have shared about fatigue while tapering off of prednisone:
--- Chronic Fatigue while tapering Prednisone for PMR: https://connect.mayoclinic.org/discussion/chronic-fatiguewhile-tapering-prednisone-for-pmr/

@edwardh, @dadcue, @mtr2601, and others have all shared their experiences with fatigue, PMR and tapering and may have additional thoughts to share with you.

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