Initial Dosage of Prednisone Impacts Long Term Recovery

From my experience with uveitis and other autoimmune problems, I would tend to agree with the results of this study. High dose (upwards to 100 mg, but 60 mg was usually enough) followed by a fast taper (2 months or less) was the approach I successfully used to treat uveitis and flares of reactive arthritis to achieve remission. I would still have recurrent flares every couple of years.

PMR was a different beast of a problem when I was diagnosed. First there was a delay in being diagnosed with PMR ... the assumption being that my symptoms were being caused by another flare of reactive arthritis which isn't treated with long term prednisone. My rheumatologist was reluctant to prescribe prednisone to me thinking I was taking too much of it.

After more than a year of not being allowed to do my usual regimen of a high dose followed by a fast taper, my symptoms evolved into widespread pain and stiffness after initially only being unable to lift my arms.

When PMR was diagnosed, my prescribed prednisone dose was only 20 mg which wasn't anywhere near enough in my opinion. After a few more months my rheumatologist wanted me to find a "stable dose" that worked which turned out to be 40 mg. I was then told to taper slowly. I was informed that I would be taking prednisone for at least a year or two.

I was unable to taper down to 20 mg for nearly 10 years without having recurring relapses along with continuous disease activity. I suspected that something else was going on and my problem wasn't only PMR.

I was unable to exercise and I had to retire early on disability at the age of 62. Overwhelming fatigue was my biggest problem when I retired. I still had pain but it could be explained by other problems and not caused by "just" PMR. Prednisone relieved most of the other types of pain but surgical intervention was required for other problems.

After a biologic was prescribed for PMR, I was able to quickly taper down to 3 mg. I was then diagnosed with adrenal insufficiency. In my opinion, a low cortisol level made it difficult for my body to "regulate inflammation." I was also having problems regulating my blood pressure, cholesterol level, weight, metabolism, mood and yes even my sleep pattern.

I found it interesting that these things are some of the things cortisol is supposed to regulate. My endocrinologist said most of my problems were caused by long term prednisone use.

Thanks for this thoughtful and intelligent commentary.

I'd appreciate any of your thoughts on this question:

Have you ever heard of someone with all the symptoms of polymyalgia rheumatica, EXCEPT the stiffness?

Although I've had all the expected pain, and then some, there has never been any stiffness. I've been able to continue to lift my arms above my head and move about normally from the beginning. There have been no problems getting out of bed or into the bath or anything like that.

It's an oddity of my PMR that is unresolved.

And if the reasons for this were understood, it could perhaps give more guidance to my treatment. The doctors and rheumatologists I've seen so far have no answers, and just say I have a "severe and unpredictable presentation"...

I have all the other indications for PMR. I experienced severe bilateral shoulder & hip pain, sudden onset, and responded within days to prednisone, although it has ultimately taken 60 mg/day to bring the inflammation down to normal levels. I have tested negative for all other autoimmune diseases they can test for (8 blood draws so far and counting), I'm negative for cancer, negative for infection, negative (so far) for Giant Cell Arteritis. I have a northern European background, so I'm likely genetically predisposed to PMR. It seems like the right diagnosis.

For some background, I had always been very healthy and active, but at 63 years of age was diagnosed with PMR on Feb 3, 2023. I'm on 60 mg of prednisone because my inflammation was extremely severe. (My untreated CRP was CRP = 347 mg/L. Untreated levels above CRP =150 mg/L are very rare indeed for PMR, and above CRP = 200 mg/L is almost unheard of.)

Spondylitis is like what you describe. It is a progressive type of autoimmune disorder. In the early stages it is hard to detect the source of the inflammation. The damage that is done takes time to reveal itself. Reactive arthritis is just one type of spondylitis. The "reactive" part of the diagnosis is a reaction to an infection but the infection can be long gone when the arthritis part of it begins.

Spondylitis is an umbella term for about 6 different types. People test negative for RA.
https://www.medicalnewstoday.com/articles/spondylitis#types
You can have characteristics of all of the types of spondylitis. A diagnosis is based on which characteristic predominates. Sometimes people start out with one type and are later diagnosed with another type.

Spondylitis is a seronegative inflammatory arthritis
https://www.arthritis.org/diseases/more-about/what-type-of-ra-do-you-have
Spondylitis and PMR have similar symptoms:

PMR - involves tendons, muscles, ligaments, and tissues around the joint, symptoms often include pain, aching, and morning stiffness in the shoulders, hips, neck, and lower back.

Spondyloarthropathies – This group of rheumatic diseases principally affects the spine. The tendons and -ligaments around the bones and joints become inflamed, resulting in pain and stiffness.

I didn't have too much stiffness when I was first diagnosed 35 years ago with reactive arthritis. I was able to carry on normally when I was in remission. I just needed to do the high dose of prednisone followed by a fast taper to get back into remission. I had very high inflammation markers but not as high as yours.

The pain caused by reactive arthritis was sudden onset and it was much worse. PMR came on gradually and slowly became more painful. I didn't have enough prednisone to take so there wasn't much I could do about it.

In my opinion, PMR doesn't respond to prednisone as well as people claim because you have to take prednisone for a long time. My diagnosis of reactive arthritis with uveitis was called "steroid responsive" and I could easily go back into remission.

There is a genetic marker called HLA-B27 which might be something to test for.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079257/
A positive test won't confirm anything but it will suggest that you are predisposed to certain autoimmune problems. HLA-B27 isn't associated with PMR but is associated with many other things.

So true! Because I had an incompetent rheumatologist who diagnosed me at age 47 with a Parvovirus instead of PMR and did not prescribe prednisone for 8 months , I continued to have chronic PMR at age 74. Taking 5 mg prednisone and 200mg bid Placquinal which works well.

Thanks this is very helpful. I did test negative for rheumatoid arthritis. I guess that makes me "Seronegative".

My "PMR" condition has some similarities to reactive arthritis that your link pointed to.

1. sudden onset
2. inflammation of the eyes (but without the discharge that is usually seen in reactive arthritis)
3. painful joints

I had an eye exam a few days ago, after experiencing severe eye inflammation and double vision. I had already gone to 60 mg of prednisone before the exam, which brought the eye inflammation way down. The opthamologist said the optic nerve was not inflamed and all my eye structures looked normal. He did not mention uveitis.

It might be worth testing for the HLA-B27 gene. However, I do not have any pain issues in the spine. Do all reactive arthritis victims have this? In my case, all the pain is in the shoulders, arms, hips, buttocks, front midsection, and legs.

@redboat I'm not suggesting you have reactive arthritis. You have to go with whatever a doctor tells you and I'm not a doctor.

Reactive arthritis is just one type of spondylitis. There are 6 types but that was how they were classified in the past. There has been a new classification system that recognizes just two broad categories.

Peripheral spondyloarthritis (pSpA) typically causes inflammation in the joints and tendons outside the spine and sacroiliac joints.

and

Axial spondyloarthritis (AxSpA) causes inflammation and pain in the pelvis, the spine, or both.

You can also have a combination of both peripheral and axial.

To make it even more confusing ... you can still have PMR in addition to spondylitis.

In my case, PMR was diagnosed about 20 years after reactive arthritis and uveitis. PMR just blended into what was already an inflammatory mess. My rheumatologist mostly referred to widespead "systemic inflammation." and not necessarily any specific diagnosis.

In my opinion, it is the inflammation and pain. that needs to be stopped. I used to tell my rheumatologist that she could call "it" whatever she wanted to. I was at the point where I was willing to try anything.

The biologic I am currently taking was a nice surprise. I like my biologic much better than prednisone. My biologic was targeting the inflammation cause by PMR but it isn't FDA approved for PMR. My rheumatologist just had a hunch that it might work in my case.

There are many biologics that target different things. It is more about finding something that works better than long term prednisone. There is no cure for most autoimmune conditions.

Thanks. 60 mg of prednisone is mostly stopping my pain, and my last blood test showed "normal" inflammation, although the ESD was still a little on the high side.

You're right, the "name" given to my disease is not important in itself. It's the underlying treatment strategy is what really matters. Some autoimmune diseases apparently linger much longer than others so the tapering schedule might change if it turns out what I have is not PMR. The decision to use other biologics could also be affected.

Whatever I have, it definitely has some differences from a classic presentation of PMR:

1. Inflammation in structures at back of eye (causing double vision)
2. No stiffness or "gelling" in my shoulders or hips
3. Inflammation levels statistically far, far above those with PMR. By my calculations, using Gaussian statistics, I'm at something like a 1 in 250,000 level if it is PMR.

It sounds like you are using tocilizumab. I've heard it targets IL-6 and can really help, especially with tapering.

PS I've learned the hard way recently that "relying on what my doctor tells me" can be very dangerous to my well-being. Yes, they are technical experts, but the decisions and responsibilities are mine. They work for me.

Yes ... I was offered Actemra (tocilizumab) for PMR after "all other treatment alternatives failed." That was the way it was worded on the approval request. I'm somewhat dismayed Actemra wasn't tried sooner.

I tried to taper off prednisone starting from a dose of 40 mg when PMR was first diagnosed. I had many setbacks but generally tapered slowly for more than 12 years. I never could get much lower than 15 mg.

Actemra was started after my rheumatologist said I too young to take prednisone for the rest of my life. My overall goal was to get off prednisone so I was willing to try anything.

I was able to taper off prednisone in less than a year after Actemra was started the first time. It would have been sooner except an endocrinologist needed to be consulted for adrenal insufficiency.

Another problem I encountered was my "history of" uveitis. As far as anyone knew, uveitis wasn't a problem anymore because it hadn't recurred for 15 years.

I was taking Actemra injections every two weeks and doing well when I tapered off prednisone the first time. Then I had a massive flare of panuveitis and 60 mg of prednisone was restarted and Actemra was stopped.
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/uveitis
A uveitis specialist said Humira (adalimumab) was optimal treatment for uveitis. That might be true except Humira allowed all the pain to return. I got stuck on 15 mg of prednisone again along with Humira.

I'm back on Actemra but doing weekly injections instead of every 2 weeks. Now the uveitis specialist says the weekly injections of Actemra "seems to be working." I was able to taper off prednisone in less than 2 months the second time Actemra was started.

I have been off prednisone for nearly 3 years and haven't had many medical problems except for severe lumbar stenosis caused by "degenerative arthritis." I told the surgeon that I didn't know that I had a bad back because prednisone prevented the pain.

Except for my back, other medical problems related to long term prednisone use seem to be improving. Surgery on my back has been postponed. The large synovial cyst seems to have disappeared since Actemra was restarted. The synovial cyst was causing problems along with arthritis.

Synovitis is associated with both PMR and inflammatory arthritis. Enthesitis is commonly seen with inflammatory arthritis.
https://pubmed.ncbi.nlm.nih.gov/11824948/#:~:text=Conclusion%3A%20Synovitis%20was%20detected%20in,rare%20at%20any%20articular%20site.
Way too much "itis" if you ask me. With your inflammation markers, I would guess that is the problem.

Wow that is quite a history. Sounds like the tocilizumab has really helped. That's good to know. I hear others give similar positive impressions.

New rheumatologist for me today. He suggested that I may have the form of GCA that strikes the arteries other than the head. This may be in addition to PMR. Or I might just have the GCA. It would help explain the inflammation levels that are really inconsistent with PMR. And if it's just GCA, that would also explain my total lack of stiffness. And maybe even the inflammation at the back of my eyes.

A PET scan can diagnose both conditions, and one is scheduled for next week, so we'll see,

The rheumatologist also mentioned today that tocilizumab should be considered for me going forward.

Pending results of the PET scan and weekly blood test, he tentatively wants to start tapering my prednisone down from 60 mg in a few more weeks.

@dadcue Just curious what biologic you are taking. I am on Enbrel for Ankylosing Spondylitis. I don’t seem to need the high level of steroids that many are taking. I do need them though, wo PMR is worst than AS to me. Not sure if connected.

I forgot to mention I had countless bouts of
uveitis that would only respond to oral prednisone, before being diagnosed (10 yrs ago with AS) and starting biologics.