← Return to Feeling tired! Do others with PMR feel significantly more tired?

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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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Replies to "I'm weaning my steroids right now and that afternoon tiredness has returned. I sleep very hard..."

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.

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.