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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Yes, I came down with chronic fatigue at the same time that I started with prednisone. I’ll post when I have more info to report.

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@villager7

Yes, I came down with chronic fatigue at the same time that I started with prednisone. I’ll post when I have more info to report.

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My fatigue has increased as I taper.

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@saltyg

I suffered from Chronic fatigue and brain fog. My rheummy recommended I get nutritional IVs. It is administered by a nurse in his office. When I say game changer I mean it. I went from a limp dish rag so to speak to a chatty Cathy and energizer bunny. Does not alleviate pain as far as I notice but gives me the energy and mental strength to over come the daily aches and pains. Seem to recover from flares faster too.

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By "nutritional iv's" are you referring to vitamins like B12 and/or minerals or something else?

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@edwardh

By "nutritional iv's" are you referring to vitamins like B12 and/or minerals or something else?

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Good question ... I wasn't sure either. I assume it was just the vitamins and minerals.
https://www.empowerpharmacy.com/what-is-iv-nutritional-therapy
There is another type called TPN ... total parenteral nutrition. You would probably be very sick and couldn't eat to receive that.

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@edwardh

By "nutritional iv's" are you referring to vitamins like B12 and/or minerals or something else?

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Correct they alter it somewhat depending on what's needed energy, immunity boost, stress, brain fog (see tremendous improvement with this)

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@saltyg

Correct they alter it somewhat depending on what's needed energy, immunity boost, stress, brain fog (see tremendous improvement with this)

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Are you receiving this IV because you are on prednisone or for some other reason?

I was told to take one vitamin for one thing and another vitamin for another thing. My labs would show a lower level of this or that.. Most of the time it seemed like it was related to a prednisone side effect but it could be age or diet related. The treatments were over-the-counter things so I ended up taking a multivitamin with minerals.

Now whenever a doctor asks me if I'm getting enough this or that ,,, I just say yes to everything. I don't know if I need everything or not but it doesn't seem to cause any problems.

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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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I’m down to 7 1/2mg of prednisone and am feeling as you, napping because of lack of energy. I’m having my CED bloodwork done today to see if I am able to decrease the prednisone and I’m calling my PC Doc for other bloodwork to see if I’m lacking any Vitamins/Minerals or anything else that’s causing this lack of energy. I’m having PT and Occupational therapy 2 days each a week trying to rebuild muscle and strengthen my muscles back.
I hate medicine, especially steroids and they don’t like me and side effects are always involved, but I’m taking it because it did stop me from becoming a crippled person. I’m digging for answers of how to get off of it and return to normal.
Hopefully I get some answers from the doctors in a day or 2 where I stand - I don’t give up easy.

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@megz

I previously reported here that I was very fatigued for around a month at 8mg. That fatigue has now lifted, so I assume it was just an adjustment to reductions. Now on 7mg, my energy level is fairly good, better than before. Normal activity is now possible again.

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Thanks megz. I can concur with your assessment. My intervals of fatigue are always around the time I'm tapering down. They are generally short lived. A week or so after the new dose. Down to 9mg now. 10 months into this PMR was down to 5mg in Sept. when a flare up took me back up. 71 with fairly good energy levels. But less reserve because of the PMR. Ernie

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@flymetothemoon

I use turmeric in everything and take a capsule every morning for over a year. It has done nothing for the flare ups. I know it's supposed to be help with inflammation, but I haven't seen improvement. I have a few weeks left on Prednisone being down to 2 mg. Some nights are not great, and I feel like a vampire.

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Turmeric causes terrible stomach pain for me.

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