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!

I ended up with undiagnosed gout for 30 years. I had inflammatory pain that immobilized me for 30 years. The doctors would look at the x-rays and not looked past the osteoarthritis. I am very thankful that I limited my prednisone use because it’s really bad for us. It is OK for a crisis or flair intervention, but not for regular use. My personal opinion is that the doctor is being lazy if they stick you on prednisone and say that that’s all there is for the rest of your life without trying to work with you to eliminate the cause of your inflammatory pain. It was a fluke that I tried. ZAZZEE tart cherry capsules upon recommendation of someone from this site. overnight it resolved 30 years of inflammatory pain! I spoke to my doctor she gave me a uric acid test(why didn’t anybody do that before I don’t know maybe I wouldn’t have registered) but I was definitely high but inside the boundary so she didn’t want to do anything. I asked to be put on the medicine because my dad had gout and I know it’s inherited. My next lab went perfectly normal and it fixed a gazillion things that were going wrong with my body, so don’t give up and ask those questions for things you think are harmful to your body. I hate it that doctors don’t have the time for us anymore and that women are incredibly under diagnosed.

@loriesco

I'm a man --- I wish they would stop adding another diagnosis. I have more diagnoses than I need and acquiring more isn't good either. I wish I would be under diagnosed. I was recently diagnosed with something that I would rather not know that I have.

As for gout, that was another recent diagnosis. I passed a very painful kidney stone that was composed of 85% uric acid. My blood uric acid level was also very high. I still wasn't diagnosed with gout.

God only knows how long I had gout because I had enough pain without gout. My rheumatologist finally said maybe gout was contributing to my pain even though I denied ever having a flare of gout.

My rheumatologist looked at my deformed joints in both of my big toes. I called them extra large bunions and said my father's toes looked the same. I thought that I inherited his toes because he wasn't diagnosed with gout. He only had "sensitive feet."

It took maybe a minute to do an ultrasound of my big toes with a little machine that wasn't used very often. There were a couple of doctors trying to figure out how the machine worked and how to use it. Then a more experienced doctor did some training to the other doctors and said I definitely had gout by quickly doing the ultrasound. He said there was so much trophi (uric acid crystal deposits) in the joints of my big toes it was surprising that I never had a gout flare.

I said maybe I had a gout flare but I didn't know I had gout because I wasn't ever diagnosed.

@dadcue it’s really hard for me to get rid of my anger around not being formally diagnosed with gout after 30 years until recently. I went to top drawer arthritis doctors many over many great medical institutions like UCSD and the VA Naval hospital in Balboa Park, I even had gout flares 25 years ago and had to go to the hospital for them. Then they were completely ignored my history with my father gout was ignored. My continued inflammatory pain was ignored. I demanded to be tested. They kept testing me for rheumatoid arthritis and when that came up negative every five years they would not dig deeper. I am very very angry. It wasn’t until I tried the tart cherry capsules by ZAZZEE that within 24 hours all my pain disappeared after 30 years. Not only that but my interstitial so us and quite a few other things got better. There’s something else you should know that there’s two kinds of gout. One is the traditional gout which is stimulated by high uric acid levels in your body ergo your kidney problems and your stones, and there is something called pseudo gout. I thought that was just something that mimicked gout because the stupid doctors seeing me at the time didn’t tell me that it was actually something. I honestly don’t think they knew. But it is something different. It’s caused by calcium deposits instead of uric acid deposits and there’s nothing that can be done for it unlike traditional gout, which is helped by a low purine diet and medication. The pseudo, gout, flares can only be eased by things like Tylenol and painkillers. If you’ve done the testing and you have high uric acid, I think you can rest assured that you have regular traditional gout. I think that is better than having the other kind of gout. After 30 years, the knots in my fingers and the swelling have stopped progressing.!!! that is nice. I am very content on the allopurinol medication. And if my joints start to get sore, I can take an extra pill because I’m on the lowest level dose. Yes my medical history at Ucsd is like eight pages long of diagnosis sees and problems. I used to bug them about removing some of them or hiding them but now I just leave them because if I were to go to the hospital, somebody can see all the things that are there and better diagnose me with whatever I might be currently experiencing.
Natural remedies work great for relieving, gout and avoiding flares for 25 years I make a joint juice of tart, black cherry Noonan juice, apple cider vinegar, and lemon juice maybe the whole thing totals about 6 ounces Then I add about 24 ounces of water or 7-Up something clear and I drink as much as I can over an hour or two and I’ve never had a flare since I started drinking my joint juice. A low purine diet is the key. Even if you were on medication if I were to eat meat, beer, mushrooms, all in one meal I would start bringing on a flare. I am anemic so it’s hard to get that need for red meat satiated with trying to be on a low purine diet at the same time. That’s how I know. I’m getting older because it’s harder to keep imbalance. I’m glad you found out.
I think you should ask them to put you on the allopurinol. My doctor was reluctant because you can get extra pain as the uric acid gets stumped in your system when you first start taking the pills. I had no pain no extra pain. And it was really clear I needed to be on the medication so my uric acid level stays exactly at Center so I don’t create any kidney or gallstones or any other kind of stones. High uric acid runs in my family family obviously because a lot of different members had gout. And if they won’t, you can still take the tart cherry capsules and those are amazing. They’re only like 10 or $15 for like 90 days on Amazon and it comes right to your door.!! let me know if you need the exact link. I think it’s like 10,000 :1