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!

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@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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I'm weaning my steroids right now and that afternoon tiredness has returned. I sleep very hard too, but I'm still able to sleep at night. Whereas, before, I was wide awake with energy in the afternoons and at night time, staring at the ceiling. Down to 15 mg. Next week, I'm taking it down by another 1/2 pill. I knew all that energy was unreal. I work remotely but only part-time at the moment and in the mornings, but afternoons when I start to read, I nod off. I try to keep moving as much as possible. Also, I notice since being on steroids my moles have started to grow and get crusty which is rather alarming to me. Hopefully, the weaning will be successful and I'll be down to "no steroids". Time will tell. Best of luck!

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@milld835

I'm weaning my steroids right now and that afternoon tiredness has returned. I sleep very hard too, but I'm still able to sleep at night. Whereas, before, I was wide awake with energy in the afternoons and at night time, staring at the ceiling. Down to 15 mg. Next week, I'm taking it down by another 1/2 pill. I knew all that energy was unreal. I work remotely but only part-time at the moment and in the mornings, but afternoons when I start to read, I nod off. I try to keep moving as much as possible. Also, I notice since being on steroids my moles have started to grow and get crusty which is rather alarming to me. Hopefully, the weaning will be successful and I'll be down to "no steroids". Time will tell. Best of luck!

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I am a 66 year old male and have had PMR for about 15 mos. I’m down to just one MGM of prednisone, soon to be none. I’ve had to regress three times, each time going back up by a MGM for a week or so. Two points: 1. My rheumatologist suggested that when I have pain after reducing my prednisone does I should supplement it with a NSAID like ibuprofen or Alieve or Tylenol. Since I have been on blood thinners due to having bilateral pulmonary embolisms ( blood clots in both lungs) a few months ago, which have since disolved I have used two extra strength Tylenol when I have a lot of pain, usually in the morning and I take two before I go to bed at night to supplement the prednisone. This has worked pretty well for me. 2. I to have bouts of fatigue. Every day around noon I get overwhelmingly tired and sleepy and have to take a nap in order to get through the day with any level of energy. This has been consistent since I was diagnosed and hasn’t lessened as I’ve decreased my prednisone. I’m not sure when it will lessen or stop. I would appreciate any input from people that have eventually gotten over the fatigue and may know when or why.

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@christopherc

I am a 66 year old male and have had PMR for about 15 mos. I’m down to just one MGM of prednisone, soon to be none. I’ve had to regress three times, each time going back up by a MGM for a week or so. Two points: 1. My rheumatologist suggested that when I have pain after reducing my prednisone does I should supplement it with a NSAID like ibuprofen or Alieve or Tylenol. Since I have been on blood thinners due to having bilateral pulmonary embolisms ( blood clots in both lungs) a few months ago, which have since disolved I have used two extra strength Tylenol when I have a lot of pain, usually in the morning and I take two before I go to bed at night to supplement the prednisone. This has worked pretty well for me. 2. I to have bouts of fatigue. Every day around noon I get overwhelmingly tired and sleepy and have to take a nap in order to get through the day with any level of energy. This has been consistent since I was diagnosed and hasn’t lessened as I’ve decreased my prednisone. I’m not sure when it will lessen or stop. I would appreciate any input from people that have eventually gotten over the fatigue and may know when or why.

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@christopherc, You mentioned struggling at 1 mg of prednisone. My first round with PMR took 3 and half years to taper off and the last six months I went back and forth between 1 mg and 1/2 mg splitting 1 mg tablets. It wasn't always precise but it did finally allow me to taper off of prednisone.

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@christopherc

I am a 66 year old male and have had PMR for about 15 mos. I’m down to just one MGM of prednisone, soon to be none. I’ve had to regress three times, each time going back up by a MGM for a week or so. Two points: 1. My rheumatologist suggested that when I have pain after reducing my prednisone does I should supplement it with a NSAID like ibuprofen or Alieve or Tylenol. Since I have been on blood thinners due to having bilateral pulmonary embolisms ( blood clots in both lungs) a few months ago, which have since disolved I have used two extra strength Tylenol when I have a lot of pain, usually in the morning and I take two before I go to bed at night to supplement the prednisone. This has worked pretty well for me. 2. I to have bouts of fatigue. Every day around noon I get overwhelmingly tired and sleepy and have to take a nap in order to get through the day with any level of energy. This has been consistent since I was diagnosed and hasn’t lessened as I’ve decreased my prednisone. I’m not sure when it will lessen or stop. I would appreciate any input from people that have eventually gotten over the fatigue and may know when or why.

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Thanks for your reply. It gives me some insight into the fatigue that has resumed, although the pain has not. The pain levels are at 0 right now. I do have other side effects from the Prednisone. My neurologist is very difficult to get hold of, so it's been a "common sense" approach to the weaning. So down 2.5 next week. Right now I'm on 15mg. I do know there are others whose cortisol levels have leveled out since weaning off the Prednisone. Looking forward to getting some of the old "umph" back. Take care.

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@milld835

Thanks for your reply. It gives me some insight into the fatigue that has resumed, although the pain has not. The pain levels are at 0 right now. I do have other side effects from the Prednisone. My neurologist is very difficult to get hold of, so it's been a "common sense" approach to the weaning. So down 2.5 next week. Right now I'm on 15mg. I do know there are others whose cortisol levels have leveled out since weaning off the Prednisone. Looking forward to getting some of the old "umph" back. Take care.

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I believe the as we wean It takes a considerable time for our adrenals to start kicking in to bring us back to our energy levels.

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@sashakay

I believe the as we wean It takes a considerable time for our adrenals to start kicking in to bring us back to our energy levels.

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I agree. I started weaning down from 20 to 15 mg on Feb. 23 and I think it does take awhile for everything to adjust. However, I will be trying another 2.5 down starting next week, which is a month. If it's good that's great, if not back up. I think a whole pill is too much, but that is what the neurologist recommended and all things considered, it hasn't been bad at all. So I'm going to try a half this time. Slower is better I think? I'm just glad to have my life back at this point.

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@milld835

I agree. I started weaning down from 20 to 15 mg on Feb. 23 and I think it does take awhile for everything to adjust. However, I will be trying another 2.5 down starting next week, which is a month. If it's good that's great, if not back up. I think a whole pill is too much, but that is what the neurologist recommended and all things considered, it hasn't been bad at all. So I'm going to try a half this time. Slower is better I think? I'm just glad to have my life back at this point.

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When I got down to 5 mg I started doing the 5/4 regime for one month then 4 for one month then 4/3 one month. It was when I went to three that I started having symptoms again and extreme pain. I augmented with Tylenol but after two weeks realized I was in a full-blown flareup. Went back up to 5 mg and that diminished the pain and my CRP went down. I think the moral to the story for me is, based on something a wise woman said in this forum, your body dictates the rate at which you wean off. I am fortunate that I have a doctor that truly believes that I know my body better than he does and he and I confer and if there is no major reason why I shouldn’t do something we go ahead with it. I would thoughEmphasize though that you should always discuss with your medical practitioner

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@sashakay

When I got down to 5 mg I started doing the 5/4 regime for one month then 4 for one month then 4/3 one month. It was when I went to three that I started having symptoms again and extreme pain. I augmented with Tylenol but after two weeks realized I was in a full-blown flareup. Went back up to 5 mg and that diminished the pain and my CRP went down. I think the moral to the story for me is, based on something a wise woman said in this forum, your body dictates the rate at which you wean off. I am fortunate that I have a doctor that truly believes that I know my body better than he does and he and I confer and if there is no major reason why I shouldn’t do something we go ahead with it. I would thoughEmphasize though that you should always discuss with your medical practitioner

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That sounds reasonable. Sadly I no longer have a family doctor and now on a waitlist here in Nova Scotia. The neurologist who's been working with me is extremely difficulty to reach. I like your doctor's approach. Hopefully, by end of May, I will actually get into our Rheumatology Clinic here in Halifax. Is the 5/4 meaning 5 one day and 4 the next?

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@milld835

That sounds reasonable. Sadly I no longer have a family doctor and now on a waitlist here in Nova Scotia. The neurologist who's been working with me is extremely difficulty to reach. I like your doctor's approach. Hopefully, by end of May, I will actually get into our Rheumatology Clinic here in Halifax. Is the 5/4 meaning 5 one day and 4 the next?

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I truly empathize with you regarding not having a doctor, we are experiencing the same here on Vancouver Island, BC. Yes the regime is 5 one day then 4 the next. then 4 for the entire month, then 4 one day and 3 the next. It does appear to be rather a long wean, but for me at 78 yrs young, this was the safest and most beneficial. Best wishes, the future will unfold but not necessarily on our schedule lol ❤

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