Feeling tired! Do others with PMR feel significantly more tired?

Posted by lcb2021 @lcb2021, Mar 15, 2022

Hi, I was wondering whether others with PMR tend to feel significantly more tired than normal. I'm on 10 milligrams of prednisone which keeps me awake and focused for several hours, but by the afternoon I usually hit a wall and have trouble finishing work, which means I have to work extra hours over the weekend (remote/computer based work). Not sure if it's due to coming down from the steroids, the PMR, or both? Thanks!

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

@chefj

I too suffer from severe fatigue and am on Methotrexate along with Prednisone. Right now on 15mg Methotrexate and tapering down to 9 mg Prednisone. However, I still have the flu feeling...weakness in arms and legs. I refuse to give in to this beast! Are you having any side effect from the Methotrexate?

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Welcome @chefj, I've never been on Methotrexate for my PMR. Hoping other members on Methotrexate can share their experience with you. The Arthritis Foundation has some information on the side effects that may be helpful.

"Up to one-third develop mouth ulcers or sores. Many also complain of headaches, fatigue and an overall “blah” feeling. This is sometimes called “methotrexate fog,” and can occur a day after receiving a dose of methotrexate (which is taken in pill form or injected once a week)." --- Methotrexate: Managing Side Effects - Arthritis Foundation: https://www.arthritis.org/health-wellness/treatment/treatment-plan/disease-management/methotrexate-managing-side-effects

How are you handling the fatigue now?

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@johnbishop

Welcome @chefj, I've never been on Methotrexate for my PMR. Hoping other members on Methotrexate can share their experience with you. The Arthritis Foundation has some information on the side effects that may be helpful.

"Up to one-third develop mouth ulcers or sores. Many also complain of headaches, fatigue and an overall “blah” feeling. This is sometimes called “methotrexate fog,” and can occur a day after receiving a dose of methotrexate (which is taken in pill form or injected once a week)." --- Methotrexate: Managing Side Effects - Arthritis Foundation: https://www.arthritis.org/health-wellness/treatment/treatment-plan/disease-management/methotrexate-managing-side-effects

How are you handling the fatigue now?

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Thanks, John. Somedays I just give in and take naps, but still manage to be exhausted early in the evenings. Other days, I try to jut keep myself busy and I think that almost works better. Altho, I do feel exhausted early in the evening. Having issues with low pressure and light-headness that no one can to figure out. Thought it might be a side-effect of the Methotrexate since it started about the same time. Docs don't seem to think it is connected.

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Fatigue yes. I do sleep well at night, but legs have been so tired, after a trip to the store and such. They feel heavy. It returned when I began weaning from the Prednisone. Started weaning down another notch a couple of days ago. Neurologist advised 2.5 down. Personally I think 1 mg would be sufficent. Woke up with pain between shoulder blades this morning and a headache. I will stick with it for a couple of weeks and hopefully it will level off. Bloodwork this afternoon.

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QUESTION: Has anyone on Prednisone experienced the "Moon Face"? My weight has not fluctuated up or down, but I now have this extremely round face and huge double chin. Heading for the Buddah look. The upside is that it smooths out the wrinkles. Have you heard of this affecting ears, i.e. pressure in the ears on both sides? I have this as well.

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@chefj

I too suffer from severe fatigue and am on Methotrexate along with Prednisone. Right now on 15mg Methotrexate and tapering down to 9 mg Prednisone. However, I still have the flu feeling...weakness in arms and legs. I refuse to give in to this beast! Are you having any side effect from the Methotrexate?

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Haven't noticed any ---- HOWEVER, I forgot to mention I take a Folic Acid pill everyday ---- both of my doctors stated I MUST TAKE THE FOLIC ---

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@johnbishop

Welcome @chefj, I've never been on Methotrexate for my PMR. Hoping other members on Methotrexate can share their experience with you. The Arthritis Foundation has some information on the side effects that may be helpful.

"Up to one-third develop mouth ulcers or sores. Many also complain of headaches, fatigue and an overall “blah” feeling. This is sometimes called “methotrexate fog,” and can occur a day after receiving a dose of methotrexate (which is taken in pill form or injected once a week)." --- Methotrexate: Managing Side Effects - Arthritis Foundation: https://www.arthritis.org/health-wellness/treatment/treatment-plan/disease-management/methotrexate-managing-side-effects

How are you handling the fatigue now?

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Just a little more info ---- both of my doctors --- PCP and RA specialist have stated that I MUST take a daily Folic Acid pill -- My Methotrexate, I take 8 / 2.5 mg - 1 day a week --- Folic Acid is every day ---

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@johnbishop

@lcb2021, I can tell you feeling tired was a definite yes for me when my PMR was active. Here's some information on the topic.

"Why does PMR make me so tired?
Conclusions: PMR patients were significantly more likely to have had multiple fatigue consultations before being diagnosed with PMR. Given the overproduction of inflammatory cytokines seen in PMR, this fatigue may represent a prodromal phase prior to consulting with more classical musculoskeletal symptoms." --- Fatigue as a precursor to polymyalgia rheumatica - PubMed: https://pubmed.ncbi.nlm.nih.gov/25366389/

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A little copy and paste ----- Why prednisone causes fatigue
Prednisone is more powerful than your body’s own cortisol. This means that prednisone will outcompete your own cortisol for receptor sites in tissue.

When you take prednisone over the long term, your body goes through a phenomenon known as feedback inhibition. The extra cortisol from the prednisone tells your body to stop making its own cortisol.

If this continues for many years, the part of your adrenal gland known as the zone fasciculata will shrink. If this occurs, not only will you be profoundly fatigued, you will need glucocorticoid drugs to keep your cortisol levels up. Your body can no longer create its own cortisol.

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@wv54

Just a little more info ---- both of my doctors --- PCP and RA specialist have stated that I MUST take a daily Folic Acid pill -- My Methotrexate, I take 8 / 2.5 mg - 1 day a week --- Folic Acid is every day ---

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Thanks! I am taking folic acid everyday. I’m very sensitive to meds. Will discuss with Rheumatologist next week. Appreciate your comments.

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@milld835

QUESTION: Has anyone on Prednisone experienced the "Moon Face"? My weight has not fluctuated up or down, but I now have this extremely round face and huge double chin. Heading for the Buddah look. The upside is that it smooths out the wrinkles. Have you heard of this affecting ears, i.e. pressure in the ears on both sides? I have this as well.

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@milld835 -- @lindapc, @artist01, @kimh, and others have posted about Moon Face in other prednisone related discussions and may have some thoughts to share with you. There's also another discussion on the side effects of prednisone you might find helpful.

Prednisone Side Effects: https://connect.mayoclinic.org/discussion/prednisone-side-effects-1/

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@milld835

QUESTION: Has anyone on Prednisone experienced the "Moon Face"? My weight has not fluctuated up or down, but I now have this extremely round face and huge double chin. Heading for the Buddah look. The upside is that it smooths out the wrinkles. Have you heard of this affecting ears, i.e. pressure in the ears on both sides? I have this as well.

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Yes my rheumatologist warned me that after being on steroids for more than two months the moon face and weight gain would begin. I did develop the moon face on 16 mg of methyl prednisone but after reducing sugar and carbs and drinking more water the moon face has lessened significantly.

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