No energy - who to see?

Some questions for you - how much prednisone are you taking? Are you tapering the prednisone? Have you seen a cardiologist? My first thoughts are that you might have a heart problem, or else adrenal insufficiency if your prednisone is down to the level where the adrenal glands need to become active again. Another possibility could be a PMR flare.

Do you have any other symptoms besides limited energy?

Twelve years of PMR along with Prednisone took every ounce of stamina from me.

It has been awhile since I felt this way. I described it as maximum exhaustion with minimal exertion. I'm relatively certain that it was a low cortisol level combined with being physically out of shape. Both PMR and prednisone can contribute to fatigue and muscle weakness.

After I was able to discontinue Prednisone ... things gradually improved. An endocrinologist monitored my cortisol level when I tapered off prednisone. She said there wasn't much she could do if I still needed prednisone for PMR. Thanks to Actemra, I didn't think Prednisone was needed for PMR anymore. She also said there wasn't much she could do for my low cortisol level except to remain on a very low dose of Prednisone. The prednisone dose she encouraged was 3 mg until my cortisol level improved. I needed to stay on 3 mg for as long as it took and after 6 months my cortisol level miraculously improved.

My physical endurance improved after I was able to discontinue prednisone. My “recovery time" after exercise was what encouraged me to continue doing more exercise. Gradually, my endurance also improved so I could exercise longer.

Do tell, how long were you off of prednisone, before you noticed endurance improvement?

It didn't happen as soon as prednisone was discontinued. Prednisone side effects going away as soon as prednisone is discontinued is a myth. I still have annual visits with an endocrinologist 5 years after prednisone was discontinued.

Twelve years was a long time to be on prednisone. The general rule for adrenal recovery is one month for every month of adrenal suppression caused by prednisone but that is limited to one year of prednisone. After 12 years my endocrinologist wasn't too optimistic about a full recovery. Even low doses of prednisone can cause some adrenal suppression. I needed to stay off prednisone to preserve whatever adrenal function I had left.

I'm not so certain my adrenals have "fully recovered" but at least my cortisol level is adequate. Some of the decline can be attributed to age because adrenal function declines with age.

I don't want to give anyone the impression that all is well. I was in a deep hole but now I have the energy to get out of the hole I was in. I'm not climbing any mountains but maybe I could if I set my mind to it and got into shape. My endurance still isn't what I think is "normal" but I don't have the "steroid burden" anymore.

The other problem is that I still have a "full range" of rheumatology problems according to my rheumatologist. However, everything has improved since I discontinued prednisone. Having "no pain" would be nice but not realistic for me. No pain wasn't realistic when I was on prednisone either.

Thank you for the complete story. I totally understand your “fight pattern”. I have been fortunate to work with a “movement therapist” for the last 20 yrs and she has been on top of it with my inception of PMR April 2024.
I took my last prednisone Saturday, am on Kevzara injections biweekly. She has encouraged me to continue pool walk, very successful, along with, Last year, My ortho Dr sent me to Aqua PT, again pool. What a huge way to exercise without impact on my body.
All of this helps with the return to exercise. Some days golf swing other days pool time. Migratory arthralgia brings a new challenge every 6 days or so.
I look forward to seeing how my body recovers from the prednisone 🤞

Oh yes, I have many other symptoms and I've had them for many years, well before my first encounter with PMR or prednisone. It's been more or less like I'm feeling now but now it seems much worse.
My heart has been checked out and basically it seems to be OK. I do have chest pain but it's part of my whole shoulder girdle, shoulder blades, upper thoracic pain and stiffness I think.
You may be right about adrenal insufficiency now that I'm on 5mg of prednisone, down from 60mg a few months ago.
What I don't understand is why I've had these symptoms for years but my cortisol blood tests have always been fine. I've seen all sorts of specialists but still no answers.
Anyway, I just don't see a way to get my energy levels back.
Mike posted on this thread with his experiences with extreme fatiguue. Sounds like, in part, I might be going through the same thing. Thanks for your reply.

Based on my personal experience, I disagree with your statement that "Prednisone side effects going away as soon as prednisone is discontinued is a myth." I think recovery from prednisone is highly variable across people, and depends on the person's age when they stop taking prednisone, the amount of time they were on it, their fitness level before and during treatment, etc. I also think that recovery is a bell curve where a small percentage of people take a really long time to recover, a small percentage recover before they stop prednisone, and the majority of people fall between those two groups.

Here is my experience. I have been a runner for almost 50 years, so I was fit and active when I developed PMR 2 years ago. I developed GCA about 7 months after that, and got diagnosed and started treatment just over a year ago. I was able to maintain some fitness all during my illness and treatment. At a minimum I would walk 4 miles every day, and lift weights and stretch every other day. I was also able to run off and on, especially after I started treatment.

I started prednisone at 60 mg per day a year ago, and started taking weekly Actemra injections 11 months ago. Today is my last day of 4 weeks at 2 mg of prednisone. About a week into my dose of 2 mg, I started feeling really great. It was like "Prednisone has left the building." Since then I've figured out that I was used to a certain amount of daily activity and a certain amount of food based on my illness and the prednisone. I'm having to develop new habits now. My metabolism is much more active than it has been. My body is burning the food I eat instead of socking it away as fat in my face and belly. I'm having to make an effort to eat more to maintain my weight. Sometimes it seems like I have so much energy I could jump out of my skin. A year ago I was having severe insomnia from the high doses of prednisone. Now I'm having insomnia because I have too much energy to sleep. I've found that I sleep better if I'm more active than I've become accustomed to. In my running I'm feeling my stride open up more. I still have some time to go to build my endurance back up. I can run 2 and half or 3 miles a few times a week mixed in with walking, but I would like to get back to longer distances without the need for walk breaks.

I realize I could still have problems getting off of prednisone. I go to 1 mg tomorrow, so the wheels could fall off then. But for the time being I'm really happy with the way I'm feeling now.