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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@sashakay

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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Who knows. I'm 72 year young but prefer to reverse those numbers. You're totally right. Not on our schedule. My belief is the slower the better, giving our bodies time to adjust. Thanks for your response. Very much appreciate it. <3

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I suffer terrible from fatigue by 2pm i am struggling to stay awake. I also struggled terribly decreasing prednisone, my quality of life was severely affected my doctor prescribed pediatric liquid so now when i get down i can taper accurately and by 0.25 each taper. I am now on Methotrexate as symptoms keep flaring when i get low on prednisone not sure how it will help but time will tell!

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i too have suffered from sever fatigue even on doses of prednisone as little as 6mg

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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 took some very good advice from a member of this forum that prednisone should only be tapered 1 mg at a time. I was having trouble tapering down 5 mg at a time as recommended by my GP. When I was able to consult with a rheumatologist, he concurred with tapering 1 mg at a time, monthly. I have gone from 9 mg to 7 mg without much pain. My rheumatologist also noted that some people have trouble tapering down from 5 mg to zero. As for fatigue, in all my 75 years, I have never taken naps. Now that afternoon siesta is very welcome. I also find it amazing that I can sleep a full 8-10 hours a night, get up early, drink a strong cup of coffee, eat a small breakfast, take prednisone along with one extra strength Tylenol and go back to bed and sleep another two hours! By the time I wake up again, most of the stiffness has gone. By noon I'm in good shape. If extra sleep gets me through this, it's a good trade. Sorry about the "barnacles", I had one on my hand that has completely disappeared. If prednisone only did the same thing for a fat tummy! Good luck--don't taper too fast.

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@annettetompkins

I took some very good advice from a member of this forum that prednisone should only be tapered 1 mg at a time. I was having trouble tapering down 5 mg at a time as recommended by my GP. When I was able to consult with a rheumatologist, he concurred with tapering 1 mg at a time, monthly. I have gone from 9 mg to 7 mg without much pain. My rheumatologist also noted that some people have trouble tapering down from 5 mg to zero. As for fatigue, in all my 75 years, I have never taken naps. Now that afternoon siesta is very welcome. I also find it amazing that I can sleep a full 8-10 hours a night, get up early, drink a strong cup of coffee, eat a small breakfast, take prednisone along with one extra strength Tylenol and go back to bed and sleep another two hours! By the time I wake up again, most of the stiffness has gone. By noon I'm in good shape. If extra sleep gets me through this, it's a good trade. Sorry about the "barnacles", I had one on my hand that has completely disappeared. If prednisone only did the same thing for a fat tummy! Good luck--don't taper too fast.

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Great advice. Thank you. Yes I agree with the 1 mg at a time. I too never used to nap. I fought it this afternoon and baked some "healthy" cookies instead. I have the "moon" face that is so often mentioned. I think the tummy was always there. I will say my eating habits have changed drastically and with the tapering not the so much "starving all the time". I'm back to work part-time. Get up very early in the morning. Take the Predinose at my 10:15 break, which seems to be a good time, for me personally. I'm 72 and returned to the workforce April 2021, until PMR rendered me not good work material. So I'm good with part-time for now and hoping my employer feels the same way for awhile longer. Enjoyed your post. The barnacles...nice if they would disappear. Take special care.

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How many of y'all get blood work done that would show your Hemoglobin level? I get a CMP, CBC, Sed Rate and CRP done every 30-60 days because I have chosen to not take oral steroids. I already take BP and HR meds and steroids cause those problems for me almost immediately, not to mention the long term problems steroids cause. I struggle with pain, mobility and range of motion but I accept that it is the road I have chosen. I do get steroid hip injections for that pain. They help a lot and are more conservative than oral steroids.
I have had fatigue for three years. For a long time I was significantly clinically anemic and the doctors ran all sorts of test to never find a treatable cause. I self corrected. Currently I am not anemic but I do get fatigued and need/want a nap many days.

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@jabrown0407

How many of y'all get blood work done that would show your Hemoglobin level? I get a CMP, CBC, Sed Rate and CRP done every 30-60 days because I have chosen to not take oral steroids. I already take BP and HR meds and steroids cause those problems for me almost immediately, not to mention the long term problems steroids cause. I struggle with pain, mobility and range of motion but I accept that it is the road I have chosen. I do get steroid hip injections for that pain. They help a lot and are more conservative than oral steroids.
I have had fatigue for three years. For a long time I was significantly clinically anemic and the doctors ran all sorts of test to never find a treatable cause. I self corrected. Currently I am not anemic but I do get fatigued and need/want a nap many days.

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Do you get enough B12? Might want to discuss with your doctor to see if it would help. I take it as part of my protocol supplements and I do notice a little energy bump after taking it.

9 Signs and Symptoms of Vitamin B12 Deficiency: https://www.healthline.com/nutrition/vitamin-b12-deficiency-symptoms

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@johnbishop

Do you get enough B12? Might want to discuss with your doctor to see if it would help. I take it as part of my protocol supplements and I do notice a little energy bump after taking it.

9 Signs and Symptoms of Vitamin B12 Deficiency: https://www.healthline.com/nutrition/vitamin-b12-deficiency-symptoms

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John, thanks for the concern. Yes, I take folic acid and B-Complex supplements plus I get that tested about every 90 days. Vitamin B deficiency is one of the common causes of anemia, easy to treat, but never my problem. We checked that early on.

We also discovered that I had a vitamin D deficiency which is the sunshine vitamin. I understand that at least in Texas where I live that deficiency is common. Too much sunscreen can cause it and skin cancers are real. I take Rx D supplement, 50,000 units one per month and it is tested semi-annually.

I eat organic at home, so I have not eaten processed foods in years. I limit fast foods to once or twice a month. I also limit chain restaurants where they serve processed foods. My weakness is refined sugar but I am cutting back on that. I don't like carbonated or sugary drinks - I drink water except for 2 cups of coffee in the mornings. I don't use sugar at home, only when eating out. Red meat consumption is limited to lean organic meat less than once per week. I'm not a perfect eater, but I think of me as a good eater. I had breast cancer in the early 2000's it was then that I realized you are what you eat. Diet changes were a set of lifestyle changes I made easily.

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@jabrown0407

John, thanks for the concern. Yes, I take folic acid and B-Complex supplements plus I get that tested about every 90 days. Vitamin B deficiency is one of the common causes of anemia, easy to treat, but never my problem. We checked that early on.

We also discovered that I had a vitamin D deficiency which is the sunshine vitamin. I understand that at least in Texas where I live that deficiency is common. Too much sunscreen can cause it and skin cancers are real. I take Rx D supplement, 50,000 units one per month and it is tested semi-annually.

I eat organic at home, so I have not eaten processed foods in years. I limit fast foods to once or twice a month. I also limit chain restaurants where they serve processed foods. My weakness is refined sugar but I am cutting back on that. I don't like carbonated or sugary drinks - I drink water except for 2 cups of coffee in the mornings. I don't use sugar at home, only when eating out. Red meat consumption is limited to lean organic meat less than once per week. I'm not a perfect eater, but I think of me as a good eater. I had breast cancer in the early 2000's it was then that I realized you are what you eat. Diet changes were a set of lifestyle changes I made easily.

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This may sound like a dumb question, but have you ever had a sleep test or done the overnight home oximeter test? - https://intermountainhealthcare.org/ckr-ext/Dcmnt?ncid=520707915. I found out quite by accident I have obstructive sleep apnea after a short conversation with a cardiologist for other issues I was having. That was about 3 years ago and it's taken a year of the dreaded CPAP use before I started feeling a lot more energy during the day by addressing my OSA.

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Actually, I did many years ago, but that was pre PMR so possibly I should talk to my PCP about it. Thanks for the suggestion.

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