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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.

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edwardh | @edwardh | Apr 18 6:12am

I have tapered down to 2mg. but the fatigue hit hard, mostly bed ridden, increasing back up to 2.25 helped so I am staying there for another week or two and will then try again dropping back to 2mg. It seems that that extra small amount has, for the time being, defined the minimum dose I am comfortable with. Fatigue is my major issue at this point, the usual pmr symptoms are minor and quite tolerable and are being held at bay. I bought a Garmin fitness tracker a month ago and it shows high levels of stress, perhaps consistent with my aging body? At 75 getting 'old' is a learning experience and slowing down seems to be natural and inevitable, but I don't like it. Grateful for the good days and coping with the bad days. This disease coupled with Lyme and Babesiosis 5 years ago have me reassessing my assumption of immortality, lol.

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shannonjp | @shannonjp | Apr 18 10:55am
In reply to @dadcue "Prednisone has lingering side effects after we taper off. When I tapered off prednisone, having no..." + (show)
@dadcue

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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Thank you! I’ve been off prednisone for 7 weeks after tapering for 13 months. Every day I feel a bit better but I still experience bouts of incredible fatigue. I thought I was going crazy. Your experience gives me hope.

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sandysomers | @sandysomers | Apr 19 9:13am
In reply to @jkristinsson2014 "I was diagnosed with PMR in December 2023 but the symptoms began in late August. The..." + (show)
@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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I was also diagnosed in December 2023, symptoms started in mid-November. When 20 mg of prednisone didn't do the trick, I was switched to methylprednisolone (48 mg), tapering down to 8 mg within 2 months. When I got down to 6 mg I had crazy stiff and painful wrists and hands - something new for me. I also had fatigue and nausea. Once I stabilize at each level for at least a week, I taper again. On April 1st I tapered to 3mg. Today I bumped back to 4 mg as I can't handle the debilitating fatigue which is getting worse by the day. I have an appointment with my endocrinologist next week to see if he can shed any light on my adrenals.

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1 reply
ncgal | @ncgal | Apr 20 11:20am
In reply to @sandysomers "I was also diagnosed in December 2023, symptoms started in mid-November. When 20 mg of prednisone..." + (show)
@sandysomers

I was also diagnosed in December 2023, symptoms started in mid-November. When 20 mg of prednisone didn't do the trick, I was switched to methylprednisolone (48 mg), tapering down to 8 mg within 2 months. When I got down to 6 mg I had crazy stiff and painful wrists and hands - something new for me. I also had fatigue and nausea. Once I stabilize at each level for at least a week, I taper again. On April 1st I tapered to 3mg. Today I bumped back to 4 mg as I can't handle the debilitating fatigue which is getting worse by the day. I have an appointment with my endocrinologist next week to see if he can shed any light on my adrenals.

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I can sympathize with you. I've been on this journey since 2020. I got down to 3 mgs. but have been flip flopping back and forth with flare-ups. Finally managed to stabilize at 3 mgs again. When I saw my rheumy two weeks ago she suggested 3 mgs one day - 2 mgs next day - then 3 mgs again continuing for two weeks, then down to 2 mgs for two weeks, etc. However, I don't have any pain but chronic fatigue and bad mood swings since I changed. I would be interested to know what your endocrinologist has to say. After so many years, I so want to get off this stuff.

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1 reply
sandysomers | @sandysomers | Apr 21 9:44am
In reply to @ncgal "I can sympathize with you. I've been on this journey since 2020. I got down to..." + (show)
@ncgal

I can sympathize with you. I've been on this journey since 2020. I got down to 3 mgs. but have been flip flopping back and forth with flare-ups. Finally managed to stabilize at 3 mgs again. When I saw my rheumy two weeks ago she suggested 3 mgs one day - 2 mgs next day - then 3 mgs again continuing for two weeks, then down to 2 mgs for two weeks, etc. However, I don't have any pain but chronic fatigue and bad mood swings since I changed. I would be interested to know what your endocrinologist has to say. After so many years, I so want to get off this stuff.

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I'm so sorry you've been dealing with this for so long. I'm still in denial that I may be dealing with this for years. My appointment is late Thursday, I'll update on Friday. I've been back on 4 mg for a few days. The fatigue is still extreme. On top of that, all the old pain and stiffness is back - nowhere near where it was before I got the beast under control but clearly a reminder that I'm nowhere near conquering this.

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