Have you been able to taper prednisone with long lasting success?

The PT gal's advice was, "Listen to your body. If what you do hurts, stop doing it. "
A former US Marine, I tend to overdo things so when I took a 15' walk on flat ground, while it did not "hurt" it was definitely no fun/uncomfortable and so she told me to stop walking.
I row on a rowing machine which has very little involvement of the AT and daily I do all the AT stretches she suggested - which take me about 20'. The stretches are definitely helping, but it's slow going getting back to where I can take a normal stride...but at least I am no longer shuffling along like an old geezer with a load in his pants! 🙂
It seems like things started to go south after my 82nd birthday which is to be expected.
Sig: Don’t forget: Good health is merely the slowest possible rate at which one can die.

At 82 years old, I admire your gung-ho spirit. Don't give up on the idea of walking normally. My father was 96 and decided that walking was "overrated." He didn't last much longer after he said that.

I personally hate walking as slow as I do. I have foot drop and people call me "thumper." I have been given a foot brace to hold my foot up and a rollator to push around. I'm committed to running again and can jog a few steps when I get the urge. The PT gal was shocked and appalled but was impressed with how fast I went just yesterday. She said as long as I didn't fall down I should press-on.

Thank you
Your experience is helpful

Thank you. Very helpful.

I'm in my 1st month of PMR, currently at 17.5 mg and my Dr. wants me to reduce to 15mg and check in in 2 weeks. Ironically, I started at 15mg a month ago, asked to go higher and he moved me to 17.5mg, back to see him 2 days ago and he already wants me to beging taper to 15mg? I told him I had run out of 2.5mg dose for a few days and took 20mg 1 day. I had the least pain from waking up until the next day on 20mg! I met him the next day and he wants me to go to 15mg. I think I will start a journal as suggested here. Thank you...

I liked the 20mg dose but only 1 day he gave me?

I was on prednisone for about 18 months. My GP had originally given it to me with a diagnosis of PMR, and only then sent me to the Rheumatologist upon my request to help me get off of it. The Rheumy put me on other drugs to help me deal with the residual pain that comes as you reduce your medication. Unfortunately, one of those drugs, hydroxychloroquine, caused my airways to swell and I experienced episodes of difficulty breathing with pretty much any exertion. It also did not work as well as the prednisone though it did take the edge off. I did get off of the prednisone and the hydroxychloroquine and was on nothing for about 7 months, but the pain was back. I had MANY bad days and tears when I just didn't want to move. I finally was able to see a new Rhemy who did a deep dive and realized that the original PMR diagnosis was completely wrong. I have just started a new medication this week. I have high hopes. We will see how it goes, but just yesterday, I was able to walk around an event for 4 hours with some tolerable pain only for the last hour. I have also found that turmeric and ginger in a tea is helpful if I do it twice every day.

Getting off of prednisone is a difficult and long process. It took me about 6 months to step it down. You are going to have some residual pain. When that happens, keep on that same lower dose and within a few days to a week, it will settle down and then you can try to go down another step as your doctor prescribes. It can almost be like fighting an addiction. When the pain flares, you are going to want to jump the dose back up, but you've got to resist that urge. It does get better. Be strong. Best of luck to you.

Everyone is different, but since you mentioned it’s only your first month with PMR, I’m wondering if you may be tapering too quickly, and might need more time before dropping the dose. The one thing we all share with PMR is that in most cases, slow-slow-slow taper is best to minimize flares and help with quality of life, so know that it’s okay to slow the taper if you feel you need to. When reducing the dose, there’s usually going to be some residual pain and/or fatigue, but the hope is it will return to baseline within a few days, and if not it might help to go up again and wait for things to stabilize before trying again to taper. My mom is a retired nurse, and she told me they used to call prednisone “the happy pill,” because it quickly improved so many symptoms. But of course it’s not so happy if we’re on it for too long! The hope is to be on the lowest fox’s possible, if at all, while still being able to preserve quality of life. Wishing you all the best.

I certainly understand how you feel. Doctors haven't even fully defined what PMR is let alone how to treat it. Long term prednisone caused me many additional problems in addition to PMR. My rheumatologist had to reassure me on several occasions that I still had PMR even though my symptoms changed and I had complications for long term prednisone use.

I do have confounding symptoms from other autoimmune disorders that I have. It was difficult for me to get diagnosed with PMR in addition to the rest of my autoimmune problems. Unfortunately there aren't many alternatives to prednisone for PMR. What gave your doctor the idea that your diagnosis was wrong?

What is the new medication you started this week?

Most of my difficulty getting off prednisone after I got a alternative to prednisone that worked was caused by adrenal insufficiency. That side effect can't even be tested for until you can maintain a lower dose of prednisone. I never got anywhere near the 3 mg dose that an endocrinologist said was necessary to check my cortisol level.

The new Rheumy REALLY looked at my symptoms and listened to what I had to say. He took about an hour with me writing it all down, considering and ruling out diagnoses. My symptoms, even initially, did not match PMR. My GP and original Rheumy dismissed the idea that the issues had anything to do with a very nasty cat bite a few months before onset since I had been given intravenous antibiotics due to septicemia a few days after the bite. The new Rheumatologist took all of that into consideration. He is saying that my body reacted to the bacteria in the bite, and even though the antibiotics killed the bacteria. His diagnosis is spondyloarthropathy (reactive arthritis). I am now on sulfasalazine, which is an old drug, but has less side effects/organ damage/immunosuppression than the newer ones. I also have MGUS, so I am very tentative about taking anything that suppresses my immune system.

I can tell you all about reactive arthritis! I was diagnosed with that 30 years ago. Symptoms of reactive arthritis. are very similar to PMR. As a matter of fact, I was begging people for prednisone thinking I was having a flare of reactive arthritis at the time PMR was diagnosed.

When PMR was diagnosed, the first rheumatologist that evaluated me said reactive arthritis wasn't treated with prednisone. My first rheumatologist labeled me as "noncompliant" because a GP was listening to me and was prescribing prednisone to me.

I don't know what happened behind the scenes but a different rheumatologist saw me at one of my follow-up visits. I don't know where the first rheumatologist went because I didn't request a new rheumatologist.

In any case, the second rheumatologist asked if I would come back to see her when I wasn't taking prednisone. She didn't say how long I should be off prednisone so I was off for 2 days before seeing her at the next visit. I think it must have been obvious to her because she took about 5 minutes to say I had PMR. My first question was, "What happened to reactive arthritis?" She said it was unfortunate to have both PMR and reactive arthritis!

I went back to the GP who was giving me the prednisone. He apologized about the experience I had with the first rheumatologist. He said at first he thought I was a crazy person who wanted prednisone but then he told me that he suspected that I had PMR.

It is very interesting about sulfasalazine. That was the first medication that was used on me to treat reactive arthritis. However, an ophthalmologist was prescribing massive doses of prednisone to treat the flares of uveitis which were associated with reactive arthritis. Prednisone worked much better to relieve the body pain so I quit taking sulfasalazine a long time ago.

The second rheumatologist who diagnosed PMR asked me once about sulfasalazine. She said she was reviewing some of original medical records. She said it was documented in my very old paper medical records that I had a "good response" to sulfasalazine. She thought maybe it would help me to get off prednisone. I told her that wasn't what I recalled about sulfasalazine. I didn't tell her I was self medicating with prednisone when I had the "good response" to sulfasalazine.