Prednisone to Kevzara back to Prednisone. ( Hope not )

@linda7 that quote is pretty funny !! Thanks for sharing that : )

Thank you tadatada1 for mentioning "Prednisone myalgia". I had not come across that as an adverse effect before but it explains my muscle weakness perfectly. Here is further info that I found useful of this common syndrome that I wasn't warned to expect from long term Prednisone treatment:
https://www.ncbi.nlm.nih.gov/books/NBK557731/

yes. That is very good. I need to read further. But I have been calling it a prednisone fatigue. There was some interesting lectures post last week on PF and the medical community calls it not possible. PF is not a valid term. The one Dr said the appropriate response is that your body is not asking for enough cortisol. That sort of says the same thing to me. I may switch terms to PM. My feeling is real , I just need to attach the correct term.

Prednisone myalgia is more about how muscles shrink or atrophy when someone is on Prednisone. The muscles will eventually break down on prednisone. I don't think it is known what causes this but it is a well documented side effect of long term Prednisone use. Elderly people have muscle atrophy due to aging. It becomes hard to separate out how much of the muscle atrophy is caused by Prednisone and how much is caused by aging.

The muscles in my legs wasted away more than the muscles in my arms. My legs are weaker than my arms but much of my leg weakness is caused by spinal stenosis. It is similar to someone who has a spinal cord injury and they lose innervation to their muscles. No innervation to the muscles will cause muscles to waste away from not being used. This is something else that causes muscle to atrophy.

PMR is somewhat of a perfect storm for muscle disease. We are elderly to begin with so we are already losing muscle tone. Then PMR makes it painful to move so we stop exercising. If we try to exercise we pay a price from doing so. We are told to "take it easy" and "pace ourselves." However, PMR has been shown to not cause significant muscle or joint damage so I think people should be encouraged to keep exercising. I discovered water exercise was ideal for me after I got off Prednisone.

I didn't attempt to do that much exercise when PMR was active. I felt like I wasn't able to do that much. That was probably true on land but not in the water. Walk-in pools are wonderful although I can now use the steps to get out of a swimming pool. I honestly thought I couldn't swim anymore when PMR was active. I was overjoyed when I found out I could still swim. You don't even have to swim. Walking in the water and moving around without the fear of falling is a great form of exercise.

I have not heard of "Prednisone fatigue." In my early days with PMR, I sometimes took additional Prednisone so I could exercise. Not only did Prednisone relieve the pain during exercise, it wasn't so painful after exercise. I felt like Prednisone gave me extra energy.

"Adrenal fatigue" refers to the adrenal glands getting "tired" because people are overly stressed. In theory, the adrenals are "overworked" and can't keep up with the body's need for more and more cortisol. The medical community doesn't believe that happens in reality. However there is no doubt that Prednisone suppresses the adrenals glands and "turns off" the production of cortisol.

Adrenal insufficiency as compared to "adrenal fatigue" is characterized by overwhelming fatigue. I think this is why people with PMR who take prednisone for a long time complain of being tired all the time. The chronic inflammation of PMR also causes fatigue but I don't think that was what caused the majority of my extreme fatigue. I was "tired" in the early stages of PMR but Prednisone energized me. It wasn't until I was on Prednisone for a couple of years when the "overwhelming fatigue" set in.

I got into trouble for saying this on another forum but I truly believe it. Prednisone is great for PMR in the short term. I don't know how long is too long but certainly taking it for 12 years like I did was too long. I believe PMR in the early stages is treatable with Prednisone as long as PMR is "self limiting." However, the longer PMR lasts ... things get worse when you toss in some of the well known side effects from Prednisone.

When you consider how Prednisone myalgia is a side effect and causes muscle pain and inflammation. When adrenal insufficiency sets in it causes overwhelming fatigue and more pain. We become dependent on Prednisone as a form of synthetic cortisol to relieve all the pain and fatigue. I think it is more of a miracle that anyone is able to taper off Prednisone. The real experts in my opinion are people who can taper off Prednisone in a reasonable amount of time.

My rheumatologist still thinks I have PMR treated with Actemra instead of Prednisone. I feel so much better being off Prednisone. I have to wonder if Prednisone was causing many of the problems that I used to attribute to PMR.

ok. good explanation. I managed to commit to exercise during PMR. I only had a couple of months prior to diagnosis that was miserable. I do believe it helped. The fatigue has been my issue while on prednisone and after. My interest peaks when that subject comes up. But, I also realize, that going from my 60's to my 70's has been a bit more of a challenge than any other decade. 70's to 80's is going to be like freewheeling downhill.

Your 70's to 80's comment about being like freewheeling downhill gave me my needed smile for the day! At 81 I feel blessed and just keep taking each day one at a time hoping PMR stays in it's remission box never to visit again. The last 6 years without it along with each of life's new gifts does make for a fun ride. 🙃

PMR struck me when I was 52. I want to forget about my 50's decades for the most part. My 60's decade wasn't much better until I was 65. When I was 65 years old, I didn't think I would reach my 70's decade. That was the year when my rheumatologist said I was too young to take Prednisone for the rest of my life.

Five years on Actemra has made a world of difference. I feel good about turning 70 in a few more days. I will take all the good days I can get. I don't know if all my problems are in remission or not. My ophthalmologist doesn't think Actemra is "optimal" and says I shouldn't be on Actemra and wants me on a different biologic.

My rheumatologist wants me on Actemra for as long as it continues to work. Apparently, it is quite possible for Actemra to stop working. I don't know what will happen if Actemra stops working so I try not to think about it.

I just started my first taper from 15mg Prednisone to 12.5 a week ago. I have noticed that I feel stronger. I am 65. This thread is very encouraging for me recovering my former activity level.

I’ve had to do my own research, my symptoms are point on with Polymalsia Rhumatatic but Dr says “ it’s all in my head”!!! For 1-1/2 years I’ve been complaining and he refuses to address my issues. I found a n Orthopedic Surgeon who took his own X-Rays of my Cervical, shoulders, down arms. Immediately he injected a shot of Cortisone Steroid in each shoulder. Amazing as it starting working instantly. My body is full of Inflammation. This was June 13th. My hips hurt like heck when I walk. I have issues an Dr has no compassion, doesn’t listen to my issues. I need Prednisone !!
Going to call the office this morning and ask for a low dose, 10 mg, 2 x daily. Can’t sleep either. Insomnia. Take Alprosolam for GAD. But this does not help to sleep. Wondering what others use to sleep. As our body’s between the hours of 12:00 am and 4:00 am are repairing themselves, wakes me with muscle pain, cramps, etc. Miserable. Any suggestions?

The most definitive result I had was that the suspected PMR responded well to Prednisone. Even after being diagnosed there is still a question as to if the diagnosis is indeed correct. There are other possibilities. I also had difficulty getting a diagnosis out of the medical community. In retrospect when I first became afflicted by the intense pain I should have gone to the emergency room and treated it like an emergency. The blood tests for inflammation helped convince my doctor to try the Prednisone. Good luck to you.