Prednisone is like running UP a DOWN staircase

"What I cannot reconcile is the profound effect it has had on my overall health. There are days I am able to continue in activities that keep me healthy, both physically and mentally."
-------------------------------------------
I agree with you. Prednisone kept me going on a day by day basis. However, my overall health deteriorated year by year.

When I was on Prednisone for PMR, I went from a young 52 year old when diagnosed to feeling like I was nearly 100 years old treated with Prednisone.. I'm now almost 70 years old and off Prednisone. Technically, I'm still being treated for PMR but maybe in remission. I feel more like an average 70 year old person now.

For me, the worst is the extreme fatigue…I have always been fairly energetic despite a laundry list of physical problems! For example, before PMR, my adult daughter and I would go to Disneyland a couple of times a year, walking around the park, enjoying the rides and just the magic of Disneyland, one of my favorite places. Now I’ve lost most of my interest, mentally and physically. For me this was a a beautiful ( and fun!) bonding experience with my daughter that I’m wondering if I will ever get back!
It helps to come to this forum and communicate with someone having similar issues.
Best wishes to you on your health journey….

The prednisone has righted more than it has wronged for me, but many days it was touch and go. I resisted going on steroids for an extended time. I believe I was close to remission when I had Covid. That shot my inflammatory markers sky high. I rolled over and started steroids. It did it's job and managed the PMR but it also did everything else you read about in terms of side effects. The fatigue was powerful but so was the insomnia and I had to be very careful to avoid getting mad. I gained weight, it fiddled with my thyroid levels, I was bloated, and on and on. I was delighted to be off of it - but it has taken months for things to become more normal. I'm still trying to find my new normal and it has been over 90 days. All I can say is hang in there, stay with this site - it offers real help and real peer support.

Go after symptoms as needed and do not assume they are all part of PMR. PMR can hide real problems, don't let it. Two years ago I had multiple abdominal tumors causing abdominal pain, it took two trips to an ER to identify these. I currently have a torn meniscus that needs surgery. I also had an accumulation of inflammation in my shoulder that required aspiration to relieve the pain - they initially wanted to do shoulder replacement. PMR gifted me with trochanter bursitis which required injections and therapy to control. Trust me not all systemic pains should be attributed to PMR.

This might be a silly question but my thighs hurt to the touch. It hurts while pulling up my pants or putting pressure on them. My rheumatologist says it is my back causing that pain. I'm taking 6 mg of prednisone, and for the most part, I feel ok. Could it really be my back causing this pain?

jlo2252: For me too-extreme weakness. I just don't have the energy. Have tried everything. Not my former self.

Thank you for your comment. I really appreciate it. So you did mention the fatigue was very powerful. I find the fatigue to be overwhelming at times because I have been so active all of my life even in my earlier years I was very athletic. So up until January of this year I was getting up at 5:00 in the morning out the door by 6:00 most mornings before the sun rises, and walking three, four, sometimes five miles. Can't do this now. Barely reach 1 mile, and I am unable to even attempt to walk most mornings due to profound fatigue. As well, the weight gain is bothersome, and I am determined to really curb my appetite. I so agree with you about the symptoms of other serious disorders /conditions being masked. Shoulder pain is a huge one to differentiate. And yes, this forum is GREAT! 😊

Thanks for your response. PMR/ prednisone - a roller-coaster ride without the thrill. Hope you will be better for another trip. 😊

No question is silly. We all contribute something here, and questions is the means by which we learn. Having said that, I don't know the answer, but I look forward to the comments. 😉

Thank you.

Morning fatigue and lack of energy are symptoms of a low cortisol level. Overwhelming fatigue is frequently reported on this forum. It is another side effect of long term prednisone use. It happens when the adrenals are suppressed by prednisone and are no longer able to produce cortisol in the correct amounts that the body needs throughout the day.
https://thesolutioniv.com/blog/low-cortisol-levels-causes-effects/
"Cortisol is released through the adrenal glands in varying amounts throughout a typical day. In the morning, more cortisol is produced to give our bodies a boost to effectively start the day off right. At around midnight, cortisol production drops to its lowest levels to allow for restful sleep. This cycle naturally happens each day as part of the body’s circadian rhythm. But lifestyle factors can set this natural balance out of whack. And that can have very negative impacts on health, wellness and energy levels."

I'm afraid a daily dose of prednisone is never going to duplicate what the HPA axis does.
https://www.ncbi.nlm.nih.gov/books/NBK279071/#:~:text=Sleep%2C%20in%20particular%20deep%20sleep,lead%20to%20arousal%20and%20sleeplessness.