Diagnosed PMR 2017, can I get off prednisone?

@pmrnew

I can appreciate how confusing it gets. If the goal of taking prednisone was "no pain" then I should still be taking prednisone. Currently, I still have pain which I describe as "tolerable pain." I haven't needed any Prednisone for more than 5 years.

The concept was clearer to me after I tapered off prednisone. My PMR pain was and still is controlled with Actemra (tocilizumab). I was able to taper off prednisone after being on prednisone for 12 years. I still have "normal" aches and pains. I even have some "abnormal pain" caused by other conditions. My other conditions aren't PMR either.

Actemra (tocilizumab) seems like a better medication for me. It effectively treats my PMR inflammation in a way that Prednisone didn't. I don't have PMR inflammation and the pain it causes anymore. Actemra doesn't suppress my adrenal function so my natural production of cortisol regulates the inflammation that isn't caused by PMR.

Other things cause me to have some pain. I can do other things which don't involve medication to relieve the pain. If the pain reaches a certain threshold and I need medication for pain ... I take a different medication but not prednisone.

The difficulty is separating PMR pain and inflammation from other things that cause pain and inflammation. That was impossible for me to do. All pain can't be treated with prednisone. Even if PMR is the only thing causing pain you will never be able to taper off very quickly because prednisone suppresses your adrenal function.
https://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/expert-answers/prednisone-withdrawal/faq-20057923

@pmrnew That’s what’s so great about this forum. We can all share from our experiences and hopefully help one another. Some days I forget I have PMR, and that is miles from where I came from! You’ll get there too.

@franklinlala

"Some days I forget I have PMR, and that is miles from where I came from! You’ll get there too."
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I would have said the same thing during the first few years after I was diagnosed with PMR. Approximately half of the people diagnosed with PMR have an uncomplicated journey and taper off Prednisone in 1-3 years. The other half remain in a world of hurt.

I don't disagree with anything you have said. It would be nice to be pain free again but I know that isn't realistic for me. My rheumatologist forewarned me that I had an "unfortunate set of circumstances" and therefore I would need prednisone for a long time. At the time, prednisone was my only option for PMR so there wasn't an effective alternative.

Now I say basically the same thing except that some days I forget that I ever needed prednisone. I'm light-years away from when I needed prednisone every day for 12 years.

Prednisone created additional problems for me. Most of those problems happened after the first couple of years on prednisone. At some point I transitioned from "short term" prednisone to "long term" prednisone. Long-term prednisone use profoundly impacted my body by mimicking high cortisol levels, leading to serious, systemic side effects.

A slow taper off prednisone was a good strategy up to a point but sometimes I tapered too slowly. When a slow prednisone taper becomes too slow, or triggers disease flares, doctors often introduce steroid-sparing medications to manage inflammation, allowing for a safer, faster, or more complete reduction in dose. Hopefully this helps to control symptoms while managing the risk of adrenal insufficiency.

I'm very grateful that Actemra has been a good alternative for me and allowed me to taper off prednisone relatively fast. I only wish Actemra was tried sooner. I'm happy that Kevzara seems to be a good alternative for many people too!

@franklinlala I started on 30mg of prednisone in March 2025 and have tapered to 1mg every other day. I do have pain, mornings are bad but get better with Tylenol. I am trying to decide how fast/slow to taper. I have been working in the yard and know it causes some pain. I question whether that is PMR or just using muscles that have been dormant since last summer. Yesterday I went swimming and did some racking so I was feeling more pain than usual this morning. I don't have much confidence in my rheumatologist since she says I don't have PMR since it only lasts 2 years--I have only had it 1 year but she thought she was right. She was looking at her records wrong. Anyway, I appreciate this group as I try to taper the best way possible. I still am not sure how much pain tells me I should go back up.

@csimmonds If only the doctors could walk a mile in our PMR shoes, they might not be so dismissive. Especially with a disease that isn’t known for a clearly defined path. Is there any chance of trying a different rheumatologist where you live? At the least you deserve a supportive doctor while going through this. I think you should be proud of the fact that you’re down to 1 mg after a year. That is encouraging! We are always told to listen to our doctors. That was my hardest adjustment with this diagnosis. Suddenly I’m in charge of deciding how much prednisone I should take. Who am I? I didn’t go to medical school. But it goes back to the doctors not knowing what we’re feeling. We have to be our own best advocate. We have to ask questions, do our homework, and learn as much as we can about what we’re dealing with. It’s unnerving to play around with medication dosing but have you considered splitting your dose to half in the morning and half at night daily to help with the morning pain? And remember your adrenal glands are trying to restart, so some of your discomfort could be related to that. If it were me, I would make small adjustments and allow them a few weeks to take affect and see where I’m at. And yes, as a fellow gardener, I question what happened to my body and why I hurt so much now. I think it’s a combination of our muscles not being used like they were a year ago, and the disease itself. Fatigue is much more prevalent than it was before. My friend, a year into PMR , felt like she would never get off of the prednisone.
After a year and five months, she did it! I looked at her as my example and try to remain positive that I will beat this sooner than later. I encourage you to do the same with a positive attitude as much as possible. While listening to everyone’s stories can be helpful. We have to remember we’re all different physically and age wise, so we can’t always compare ourselves to everybody. We are each on our own journey. You’re so close, be strong and patient. People do beat this and have positive outcomes. Why not you too? Best wishes to you, and happy future pain free gardening!

Thank you for your response. I am looking into changing doctors. I am going to ask around because there are quite a few choices. Many are together in one large practice and my current doctor is in that practice. She is so definitive about how the disease will be. I do not do well with doctors who know all of the answers. I grew up with a father who was a doctor and he was always open to options. Up until now that is how my physicians have been and I believe that characteristic saved my life--they don't just go with the obvious diagnosis and listen to me. I know I need to go slowly with tapering. I only have one adrenal gland but have shown no signs that there are issues--at least as far as I know from what I have read. I do experience fatigue. Despite having pain today I did some more raking. I want it done and if I do a little at a time it will give me an idea of what I am capable of doing without consequences. My goal is to get to zero prednisone and until these past few days I have been really optimistic. I think I am learning the path is not a straight line. Variations can happen.

@csimmonds You’re welcome. Glad to know you have options for a change in doctors. I fully agree with you that doctors can close themselves off to other possibilities when they develop tunnel vision.
The way I found one of the best doctors I ever had was by asking one of the pharmacist in my health network to write down some of the doctors with the best reputations in primary care. She collaborated with a couple other pharmacists and gave me a list of five. I did some research and made a selection. It worked out very well. And you are so right about this path not being a straight line. Keeps it interesting.

@csimmonds
When I was first diagnosed with PMR I saw a rheumatologist who told me I would be doing really well if I was properly better in two years. He said not to become too discouraged if I had to be up and down with the prednisone dose as this was common, especially once you got to a lower dose. I am on my third attempt to continue reducing the dose below 5mg, but am going very slowly. I stayed on 4.5mg for two months and am now alternating 4.5/4mg for a month before I will drop to 4mg. My GP is wonderful and says I am now the expert with the medication. Everyone is different but I’m finding this is working for me. The other advice I’ve been given is to pace myself and balance activity and rest. That’s hard sometimes but for me I know that is crucial to my progress. For the first time in over three years my CRP is in the normal range. I’m sure that eating a mostly Mediterranean diet has also helped me.

Welcome @trishw47, It sounds like you have a great rheumatologist and GP. It took me 3 and half years to taper off the first time PMR reared it's ugly head. The last six months was going back and forth between 1 mg and 1/2 mg prednisone until I was able to taper off with very little pain. You are right about the diet playing a big part. My second time with PMR I made some lifestyle changes, eating healthier and regular exercise to keep the weight gain down and I was able to taper off in 1 and half years.

You might find another related discussion helpful:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/

@dadcue
“When a slow prednisone taper becomes too slow, or triggers disease flares, doctors often introduce steroid-sparing medications to manage inflammation, allowing for a safer, faster, or more complete reduction in dose. Hopefully this helps to control symptoms while managing the risk of adrenal insufficiency.”

Hi Mike. Will you please elaborate on what you said about tapering prednisone “too slow”? What do you mean by that?

I’m on Kevzara (4 months) and have set a very slow goal of six months to taper off prednisone completely.

Is six months too slow?