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.

Hi my friend,
Yep I feel the same fatigue, like one leg is dragging on the ground of the PMR merry-go-round. Never have a consistent week, ups and down, perhaps the good days of ambitions are in short supply.
Best wishes if that's any consolation.

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I have chronic fatigue everyday without any meds. I sleep 3-4 hours during the day. Can't clean my house, had to hire a housekeeper. My husband does the cooking. I barely manage to do the laundry and my housekeeper folds my white clothes for me. It's just my husband and me so we don't have a lot of laundry. But it's a chore for me. I also have small fiber neuropathy plus I fell on black ice in the late 90's and damaged my back. Can't stand for very long, maybe 20 minutes.

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@rllh5403

I have chronic fatigue everyday without any meds. I sleep 3-4 hours during the day. Can't clean my house, had to hire a housekeeper. My husband does the cooking. I barely manage to do the laundry and my housekeeper folds my white clothes for me. It's just my husband and me so we don't have a lot of laundry. But it's a chore for me. I also have small fiber neuropathy plus I fell on black ice in the late 90's and damaged my back. Can't stand for very long, maybe 20 minutes.

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Forgot to mention the methotrexate. I tried taking it, but I just couldn't take it. But everyone is different. I'm sure some people can take it. I hope it helps you.

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@johnbishop

@macadoo, I think the chronic fatigue is just a symptom of PMR itself and possibly tapering too fast (just my opinion on the tapering). Here's some information on the topic.

"The main symptom is muscle stiffness in the morning that lasts longer than 45 minutes. It may also cause other symptoms, including: high temperature (fever) and sweating. extreme tiredness (fatigue)"
-- Polymyalgia rheumatica - Illnesses & conditions - NHS inform: https://www.nhsinform.scot/illnesses-and-conditions/muscle-bone-and-joints/conditions/polymyalgia-rheumatica

I also take turmeric daily in hopes that it will help keep my PMR in remission.

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John -

I thought so as well until this week when I went to my Endocrinologist doc for my 90 day checkup. I have been struggling with thyroid numbers being whackers ever since the onset of PMR and now I have hyperparathyroidism we are watching.

My T3 thyroid number was extremely low. This is the hormone that every cell in your body needs and it is what the thyroid gland is all about. T4 is what your thyroid gland produces and it is up to your body to convert T4 to T3. Nothing is simple in your endo system. Low T3 can cause fatigue for sure.

My Endocrinologists explained to me that prednisone interferes with your bodies ability to convert T4 so she was not surprised. So, I guess chronic fatigue when we are on steroids for PMR is the cost of getting well.

I intend to talk via MyChart with her about possible treatment options, but we needed to discuss my hyperparathyroidism more than my T3.

Thought I would share and see if others have stumbled over the same information while on their journey - and what was done if anything to treat it.

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@jabrown0407

John -

I thought so as well until this week when I went to my Endocrinologist doc for my 90 day checkup. I have been struggling with thyroid numbers being whackers ever since the onset of PMR and now I have hyperparathyroidism we are watching.

My T3 thyroid number was extremely low. This is the hormone that every cell in your body needs and it is what the thyroid gland is all about. T4 is what your thyroid gland produces and it is up to your body to convert T4 to T3. Nothing is simple in your endo system. Low T3 can cause fatigue for sure.

My Endocrinologists explained to me that prednisone interferes with your bodies ability to convert T4 so she was not surprised. So, I guess chronic fatigue when we are on steroids for PMR is the cost of getting well.

I intend to talk via MyChart with her about possible treatment options, but we needed to discuss my hyperparathyroidism more than my T3.

Thought I would share and see if others have stumbled over the same information while on their journey - and what was done if anything to treat it.

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@jabrown0407, Thank you for sharing this information on low T3 and the thyroid as a cause of fatigue. I had not seen it before. I did find some information on the topic if you haven't already seen it.

--- Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5869352/

Hope you can provide an update after talking with your Endocrinologist.

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@johnbishop

@jabrown0407, Thank you for sharing this information on low T3 and the thyroid as a cause of fatigue. I had not seen it before. I did find some information on the topic if you haven't already seen it.

--- Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5869352/

Hope you can provide an update after talking with your Endocrinologist.

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@johnbishop - thanks for the link - I took a quick look at it and clearly it needs to read with a glass of wine in one hand and a medical dictionary in the other.

I do plan of reading and parsing the information in it - I just need to find the time to focus on it since it is so technical in nature. I cannot thank you enough for sharing. You are a valuable resource for all of us.

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@jabrown0407

John -

I thought so as well until this week when I went to my Endocrinologist doc for my 90 day checkup. I have been struggling with thyroid numbers being whackers ever since the onset of PMR and now I have hyperparathyroidism we are watching.

My T3 thyroid number was extremely low. This is the hormone that every cell in your body needs and it is what the thyroid gland is all about. T4 is what your thyroid gland produces and it is up to your body to convert T4 to T3. Nothing is simple in your endo system. Low T3 can cause fatigue for sure.

My Endocrinologists explained to me that prednisone interferes with your bodies ability to convert T4 so she was not surprised. So, I guess chronic fatigue when we are on steroids for PMR is the cost of getting well.

I intend to talk via MyChart with her about possible treatment options, but we needed to discuss my hyperparathyroidism more than my T3.

Thought I would share and see if others have stumbled over the same information while on their journey - and what was done if anything to treat it.

Jump to this post

What is being monitored to determine if you have hyperparathyroid disorder? Are they looking at calcium levels?

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@virginiaj

What is being monitored to determine if you have hyperparathyroid disorder? Are they looking at calcium levels?

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@virginiaj I have hyperparathyroidism because my parathyroid hormone is high - PTH, Intact is the test name that has been above normal levels for awhile now. Yes it is tied to calcium levels but as I understand it calcium is often more of a side effect of the hyperparathyroidism than the actual cause.

My Endocrinologist is monitoring several items in my blood as well as my urine. She is not one to do any knee jerks and we are very cautious to change only one thing at a time when we decide to make a change. If several things are changed there is no way to parse the changes made to the results of a new set of tests. We have done some very conservative changes with watchful waiting every 90 days to see if the change is moving the needle in the right direction. Unfortunately, I had Covid this summer and it set my Endo tests back - we had to wait another 90 days to get more reliable results. Slow and steady wins the race with my Endo.

To date I have gone on Rx strength Vitamin D and am now on an OTC calcium supplement as well. We are still on the search for the cause and then the treatment. I appreciate my Endo's approach because she really uses the data from the historical tests to inform her decisions on next steps. She also is a big fan of Ocham's razor, as am I.

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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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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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