Grouped Into 3 Buckets

From what I've seen in these discussions and read elsewhere, suddenly halving a 5mg prednisone dose down to 2.5mg will almost certainly bring on a PMR flare, steroid withdrawal pain or an adrenal insufficiency reaction. What has he said will happen then?

@70infl, I'm with @megz on going from 5mg to 2.5mg can be too big of a jump and cause a flare. I think I would ask your rheumatologist for some research backing that there are 3 buckets/categories of patients with PMR. It may be their patient experience but I doubt there is a study backing it up. I know a whole of folks on Connect and other platforms with PMR that would definitely disagree. My Mayo rheumatologist was great in working with me while I was tapering off of prednisone. He gave me a lot of suggestions including keeping a daily log of my dosage and level of pain (0 to 10) when I woke up in the mornings before taking my dose for the day.

If you want to learn what others have experienced when tapering off of prednisone, there is a wealth of member experience here on Connect. Here's a list of discussions and comments on tapering off of prednisone - https://connect.mayoclinic.org/search/discussions/?search=tapering%20off%20of%20prednisone.

"I had been able to reduce to 5mg a day and still have reasonable comfort, trying to go lower in dosage never worked. He put me on a 30-day program at 5mg daily. Then at the first of Sept I'm to drop to 2.5mg. This is the process he's assigned to determine what category I may fall into. Wish me luck come September 1st."
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Good luck ... you will need it!

If it hasn't worked when your dose is less than 5 mg what is so special about September 1st?

There are several steroid-sparing medications like methotrexate and leflunomide that can be tried. Is that what your rheumatologist means by another type of treatment?

My rheumatologist said something similar about the 3 types of PMR. However, it took 12 years on prednisone before it was said that I had a refractory/relapsing type of PMR. Also, my PMR was probably "steroid resistant" given that I took prednisone intermittently for 20 years before PMR was diagnosed. The 20 years of intermittent Prednisone use was for other autoimmune problems and was in addition to the 12 years of daily Prednisone I took after PMR was diagnosed.

I needed another type of treatment to control PMR. A biologic called Acterma (tocilizumab) got me completely off prednisone. By comparison, I was still on 10 mg of Prednisone after 12 years. I think you are doing well to have reasonable comfort on 5 mg after six months.

"Once a daily prednisone dosage of 10 mg is reached, tapering should be slowed to a rate of 1 mg every 1 to 2 months until discontinuation."
https://www.ccjm.org/content/87/9/549#:~:text=Once%20a%20daily%20prednisone%20dosage,to%202%20months%20until%20discontinuation.
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The following link has good information about current treatment patterns of people with PMR under rheumatology care. I'm not sure how long people should take Prednisone for PMR. Two years is very common before other treatment options are tried if they are unable to taper off Prednisone.
https://www.the-rheumatologist.org/article/study-most-patients-with-pmr-arent-getting-steroid-sparing-agents-in-first-2-years/?singlepage=1

I was told 30 years ago that there are "3 possibilities" which I think are generally true for autoimmune conditions in general. I suspect PMR could be included.

The three possibilities are:
1) PMR could happen once and never happen again---people get off Prednisone. People who go years before a second occurrence might be a subset of this group assuming they can taper off Prednisone a second time.

2) PMR could relapse and then might have a relapsing pattern---people stay on Prednisone because of relapses. It gets more and more difficult to taper off prednisone.

3) PMR could become chronic or refractory to a low enough dose of prednisone that isn't toxic---people need a different treatment because cortisol that is supplemented with Prednisone when needed is the primary way to regulate inflammation in the body.

I think it is possible after many years to progress from #1 and then to #2 and finally to #3. My rheumatologist says chronic autoimmune conditions are the result of the immune system developing a memory for attacking self as opposed to foreign antigens.

It is a complicated subject but immune system memory might explain the 3 possible outcomes of autoimmune disorders. In any case, the 3 bucket analogy made me think about the 3 possibilities.
https://www.ncbi.nlm.nih.gov/books/NBK576418/

I saw my rheumatologist Aug 7th. I have been at 5 mg for awhile. Have gotten below 5 mg before but ultimately had a problem. My markers are good, crp was 1.8. When I asked about tapering, he kinda shrugged his shoulders. I asked about tapering .5 intervals and he said "I don't do that". So he wrote me out a tapering plan alternating 1 mg intervals between 5 and 4mg for two weeks then 4 mg for two weeks, then alternating 4 and 3mg for two weeks etc.. He does not believe in splitting pills. Alternating 0.5 intervals will take twice as long. Dilemma here. I get my markers tested monthly so unless I tell rheumatology I'm decreasing 0.5 intervals , he'll think my numbers are reflecting the 1 mg tapering plan. If I get down to 1mg, I'm to stay at the 1mg till the next appointment in 6 months. If I start having problems , I'm to go back to the previous dose where I was not having problems.
Me personally would not try tapering 5mg to 2.5mg.
I have been at 5mg for probably 6 weeks. Maybe there is some logic to tapering being less stress if you've been at a stable dose for a certain amt of time having no problems.

So far, this has worked for me:
From 10 to 5 at 1 per month.
Below 5 at 0.5 per month, now at 3.5.
Most days now are with no pain. Others with very minor wrist and lower back, hardly worth mentioning. Imaging does show some osteoarthritis in wrists.
I could not guess what the consequences might be of a 2.5 reduction at this point, but glad I am not being asked to try it.

@pmrsuzie
Sounds like your doctor has a sound tapering plan and I would certainly give it a try!! I hope it works for you! Good luck!

70infl @70infl Based on my experience with PMR I would think your Rheumy is over simplifying PMR profiling. This may not be bad as much as it might simply be his approach to help the patient align with his approach. First there is no single standard of treatment thus no agreed upon classifications. Patients are not totally individual but they possibly can be categorized using many facets and not just one classification. For example take an eggplant, it's a vegetable (one classification) then there are more classifications - it has a color, it has sugar content, it has fiber content, it has vitamin and mineral contents, starch etc. All these classifications need to be considered when deciding to include it in a diet, not necessarily a single meal but certainly if you are going on a special diet.
With PMR and 5mg daily steroids my concern would be the potential for adrenal insufficiency when dropping to 2.5mg in one day. My understanding is that your adrenal glands when operating normally publish something around 5 to 10mg of natural steroids. If you drop too low too quickly on oral steroids and your adrenal glands have not kicked back in you can have body pain that can easily be confused with a PMR flare. I know I had t. Dropping from 5mg to 2.5mg is a 50% drop overnight. That big a percentage can be problematic. You might ask your Rheumy how he is prepared to eliminate adrenal insufficiency as a contributing factor.
Below 5mg I talked to my Rheumy and then designed a schedule similar to what pmrsuzie's doctor uses. My plan used a pill splitter so no alternating days and I only stayed at 1mg for 2 weeks then down to 1/2mg for 10 days then off entirely. I've been splitting my thyroid pill for decades. You cannot split a time release pill, a capsule, etc.
I hope you and your Rheumy find a plan that is totally successful for you, whatever the classification.

I think this is a simple way to communicate the logically possible outcomes for PMR. I certainly wouldn't judge a Rheumatologist's capabilities on this brief moment. I've heard it, too.

Note that the American College of Rheumatology has established care guidelines. This amounts to the standard of care in the US.

Also important to remember that the biologic Kevzara was approved (by the US FDA) less than a year ago. It's been a game changer, or perhaps a life changer, for so many of us. I was stuck at 8 to 10 mg of Pred when I started Kevzara on June 12. Today I'm at 4 mg and decreasing 1 mg per week. I'm able to go to the gym 3 to 5 days per week and I've begun Pilates instruction. My daily step count is also breaking thru the 6K barrier that I could barely tolerate even occasionally touching before.

I'm so glad you're under the care of a rheumatologist. Keep learning and developing your homecare plan - diet and exercise, in my experience, aren't nearly as helpful as these drugs but they are certainly powerful enough to male a difference for many of us.

Good luck to you and keep us posted.

I'd certainly give it a try. Every person is different. If it doesn't work, you can go back up. Your doc certainly agrees as per his 3 bucket theory, which is probably based upon experience. You could ask him about that.

Please keep us posted! I think the decrease is exciting as if it works, you're closer to getting off steroids. At least for now. And we can't predict the future. If it doesn't, once again, you can adjust.

Please know, I'm in several PMR groups and many are able to decrease this amount without issue. It is not impossible. Best to you!