Prednisone for life?

It was suggested that I stay on prednisone for the rest of my life on another PMR patient forum. I was on 3 mg of prednisone along with weekly injections of Actemra. I took prednisone daily for 12 years to treat PMR and had a low cortisol level. Fortunately my rheumatologist, ophthalmologist and endocrinologist didn't think prednisone for life was a good outcome. They encouraged me to keep trying to taper off prednisone and ultimately I succeeded. Now I have been off prednisone for 5 years. I would also encourage you to keep trying.

Thank you! You always have such good advice, and we'll researched. I appreciate you!

My rheumatologist also suggested I continue a maintenance dose of 2 mg indefinitely after I had tapered successfully to 0 but had nagging gelling. I decided not to and the gelling eventually went away. I hope PMR is now behind me.

I have been on prednisone (P) on and off for 35 years, mostly on. I went on Kevzara while at 15 mg P and got down to 2.5 mg P, but could not go lower. My recommendation is to stay active, as I have been playing tennis, and maybe this has kept my bone density normal. I am 80 years old.

I think there are many that stay on steroids for life. The feeling is that a low dose is not that bad. The tapering to zero is very difficult for some and the longer your on the steroid almost impossible for others. Even when you get to zero its a slow process for you to ever feel normal. For me getting PMR at 68 and now at 74 its a new normal. I was on steroids for 6 months and my PMR burned out. My wife was on steroids for 4 years for cancer and could not stop. When you to try to get below the 2mg its cortisol withdrawal more than the PMR. That withdrawal mimics PMR pain. It can restart the inflammatory process. The tyenne is to try and hold the Inflammatory process of PMR until you can restart cortisol. I think PMR can be controlled. Its probably up to you to see if you can get off the steroid. I think its worth a try. Long term use of prednisone will leave its mark. Some more than others.

I am so very interested in this post. Prednisone is something I’ve been put on at 70 for my CREST syndrome autoimmune condition. Only in very short dosage. I realize now I have had symptoms for over 50 years as this condition was gradually percolating in my body. It is the only medication that within 24-48 hours fixes my flares which is HUGE to me. I get a cold & it stays for weeks and weeks long after everyone is better. When I get that cold it hits so hard & with every possible symptom

Sore
Throat
Sinus
Earache
Sneezing & coughing
Fatigue is constant

When I get stressed my whole head sweats & I feel breathless

I would love to just take prednisone as needed.

When I’m not flaring I can be active

Just for context:
I am a 75 year old female. Most of my blood tests over the past many years show I am healthy. Pain is invisible. It's important to remember that. Doctors can't see it and neither can you!

I developed rheumatoid arthritis about April of 2025. I now have 10 30-pill refills of 1 mg prednisone. I only take it for flare ups (which occur about every 6 to 10 weeks) and only for about 7-10 days at a time. I am currently taking it again for the past 4 days and it's working well. I don't even bother informing my doctor when I have a flareup. Nothing he can do anyway.
For the rheumatoid flare-ups I start with two 1 mg pills on the first day and then take 1 pill each day thereafter. It seems to work for me. My mood gets better too while I'm on it. I know it's a false sense of well-being but I'll take anything I can get to feel better for a while. Just so you understand too, it will thin your bones also making tooth loss more likely. I'm already old enough to have some bone loss so I don't need to make that worse.
Now I only take the 1 mg which seems to do the trick. I hope it continues. Some folks aren't that lucky and have to take much larger doses for longer. My heart goes out to them!
I wish prednisone helped with the headaches and fibromyalgia, but it doesn't. However, I take about 7.5-10 mg of Ambien each night which helps me get the rest I need along with extra strength acetaminophen and ibuprofen to fight these pain battles. After the stroke I slept on my own almost round the clock for several months as my brain healed. Now my brain has healed reasonably so, I'm back on the Ambien. I know some people react poorly with Ambien but I've been using it successfully for about 10 years without any problems except for the peanut butter and jam taco I made one night many years ago. That was hilarious! I left all the makings out on the counter for my husband to discover the next morning. Now I just lay down & close my eyes - don't try to do anything else. I take a little Melatonin (2.5mg) to help it keep me down longer because Ambien only works for about 4-5 hours on me but the quality of sleep is superior for me. Sleep is important for pain.
I finally have an appointment in about 2 more months with a pain specialist who can legally prescribe opioids for pain. Better later than never? I had to complain bitterly about the arthritis to my doctor to finally get him to capitulate. The new pain specialist is, ironically, the same doctor who performed the radiological ablation procedure on my neck about 10 years ago that got rid of my migraines entirely until just recently. I know he will agree to do it again. However, general anesthesia might be contraindicated because of the stroke I had in 2024. I might just have a local to be safe.
After many years of taking anti-depressants (Celexa, Elavil, Paxil, Tofranil, etc.) supposedly for the body pain and migraines which never worked very well. They just caused severe sweating on my head only and eventually started causing frequent tongue biting. After going of that stuff (SSRIs) after 45+ years of on & off again taking them supposedly for pain, life got a whole lot better! Depression was never the real problem (I thought it was just me or menopause until about 3 years ago). I think SSRIs are the devil's invention personally. They created more problems for me than they solved. And yet I was stupid enough to start on them again each time a new doctor prescribed them for pain. "This one is different from the others they said and if they don't work there are several dozen others we can try". Not to mention the brain zaps from withdrawal are awful and every anti-depressant causes them if you want to get off unless you titrate for a year.
I have other health issues besides Fibro & Rheumatoid arthritis. The Basilar artery stroke (9/2024) which is normally fatal (God loves me), COVID & shingles & a case of regular flu in 2025, frequent left-sided only migraines since age 13. Oh, and recently, a kidney stone. That one was fun! Super painful! Unbelievably so. I wonder what's next on the pain menu for me. I just keep reminding myself God loves me and it will all be worth it in the end.
Best wishes for your future pain issues! May they be few and far between!