Any Tips For Tapering Off Prednisone?

@sassysaveur

Symptoms of prednisone withdrawal are similar to PMR symptoms so it is hard to differentiate one from the other. It is important to know which is which but I could never say I knew for sure which one was the problem. Both PMR and prednisone withdrawal cause fatigue, muscle aches, and joint pain. I tended to believe my symptoms were caused by both PMR and prednisone withdrawal most of the time.

What you should do for a PMR flare is different from what you should do for prednisone withdrawal. For a PMR flare you would most likely want to increase your prednisone dose. For prednisone withdrawal symptoms you probably want to keep you dose the same or taper more slowly. Prednisone withdrawal symptoms might go away in a couple of days whereas pain from a PMR flare might get worse.

There was another problem I had called adrenal insufficiency. Ideally, that should be verified by testing a cortisol level. You need to have prednisone out of your system first by being able to be on a very low dose of prednisone. It is debatable how low of a dose but my endocrinolgist said I neeeded to be on 3 mg or less of prednisone. On top of being on a stable low dose of prednisone for an extended period of time, my endocrinolgist said I had to not take my 3 mg dose for 48 hours before an a.m. cortisol level could be done. An a.m. cortisol level had to be done between the hours of 8 a.m. and 10 a.m. according to the lab that did my cortislol level. All the rules that needed to be followed would have been impossible for me to do if PMR wasn't controlled. My PMR was controlled by Actemra at the time my morning cortisol level was done. It would have been impossible for me be on low dose of prednisone and hold my dose for 48 hours without Actemra.

My cortisol level was low so I had to stay on 3 mg for 6 months until another cortisol level was done. My second cortisol level was called "adequate" by an endocrinolgist. I was told that it "might be safe" to stop taking prednisone. My endocrinolgist said 3 mg was a low dose and as long as my cortisol level was adequate then I could simply stop taking prednisone. The scary part was whether or not my cortisol level would be adquate if I was in a car wreck or something very stressfull happened. That was when my need for cortisol would increase dramatically. My endocrinologist gave me a direct number I should call if anything remotely stressful happened. She said it would be best to call her first but I wasn't required to call first. My instructions were I should take prednisone again "for any reason if I felt the need." The intent was to be safe rather than be sorry that I didn't take prednisone.

My symptom of adrenal insufficiency was mostly "overwhelming fatigue" whenever I tried to do anything at all. I tried to exercise but I wasn't able to recover very quickly after small amouts of exercise. My "recovery time after exercise" improved greatly over time but it was nearly a year before I could do as much exercise as I wanted to do. I had muscle aches and pains too but those could be explained by muscles disuse and being out of shape. A physical therapist was very helpful to me during my recovery period after having adrenal insufficiency.

Technically, I still have PMR but now I'm treated with Actemra rather than prednisone. I took prednisone for 12 years for PMR. My recovery from "long term prednisone" is still being monitored by an endocrinologist. I continue to see a rheumatologist for PMR and some other autoimmune conditions.

@leetaanderson I have normal sed rate and CRP and yet definitely have PMR. The GCA I have the symptoms yet my doctor remains unconvinced. I am confused because I had intense scalp tenderness for months … I am being treated in high dose but this non commitment to diagnosis is driving me crazy. Your experience with questionable diagnosis or anything else is appreciated. Thanks.

@sassysaveur
I was diagnosed with PMR in March of 2025 by my GP.
Prednisone helped tremendously, but my CRP and SED kept climbing. Finally saw a rheumalotogist in October, where he daignosed me with GCA. Inflammatory markers still high, and based DX on symtoms. Unrelenting headache, pain in jaw, temple, and ear - all on right side. Plus night sweats and weightloss.
Upped prednisone and added Actemra.
Had bilateral biopsies and CT scan couple weeks later. Didnt show arterey damage, but still treated for GCA.
Had a relapse this february, back up on prednisone and switched from actemra to Rinvoq. Rollercoadter ride for sure!
I think having a good rheumatologist is key. The cant diagnose either condition based on blood tests, but a combimation of symptoms.

@emrose your story is very interesting. Can you tell me more about your jaw pain?what does jaw pain feel like to you? (I’m interested in that symptom in particular and how others have experienced it. ) thanks