How are you tapering prednisone?

I appreciate the information. It is definitely something to consider when we try to taper off Prednisone.

A "slow taper" expressed in time (days, weeks, months or even years) is different than the amount of the Prednisone reduction expressed in milligrams. There really isn't a single best way to taper off Prednisone. Some people find "alternating days" works when you decrease by 100% one day and increase back again.

The whole concept of tapering slowly off Prednisone is about adrenal recovery and to prevent disease flares. Theoretically, PMR should be inactive when you taper if you are on the "lowest effective dose." Disease control and adrenal recovery needs to be coordinated in such a way for both to happen at the same time.

The Prednisone Pharmacist addressed the problems we encounter when we get to a lower dose of Prednisone. She seemed frustrated that there were no guidelines until recently. One of the guidelines states that there is no need to taper Prednisone if we only take it for a few days regardless of the dose.

The way I got off Prednisone as described above was based on PMR being controlled with a biologic called Actemra (tocilizumab). My cortisol level also had to improve and get back to within the normal range. My endocrinologist just wanted me to be aware of Prednisone withdrawal signs like fatigue or joint pain and communicate with her. She also gave me permission to restart Prednisone again for "any reason" if I felt the need after I stopped Prednisone. I think she was concerned that I could experience an adrenal crisis but generally didn't think that would happen. She just wanted me to be aware about what might happen if something very stressful like a car wreck happened to me.

Yes, I didn't mention how time as well as the amount (mg) of prednisone are the factors to consider. I am tapering a 1/2 mg every 4 to 6 weeks.
I'm at 8.5 mg now but as I get down in the lower amounts, I will taper even more slowly.

My understanding is that you can take any dose and taper quickly if you are inside of a two week window. After that the adrenals are likely to have gone to sleep and need a slow taper to wake up.

I don’t understand how the heck you cut your pills at percentages other than 50, 25%.

You can get 1 mg prednisone pills and cut them in half for .5mg. If needed, you can cut the ,5 in half also.
Prednisone pills come in many different strengths.

I tapered very slowly in terms of dosage, trying to keep a slow and relatively steady % decrease (cutting 5 and 1 mg tabs) but I wonder if my not staying at one level long enough contributed to my relapse? After an 8-month taper and 3 months ‘clean and feeling fine’ I’m back on 20 mgs with a full blown flare. Are flares inevitable?

Thinking back, just days before this flare I had been stressed with several sets of overnight visitors on top of fall garden prep work—all at a pace that didn’t allow for rest periods. It seems every PMR episode occurs as a sort of let-down relief from stressors.

Diet may play another important role. I normally keep to an anti-inflammatory regimen. Now I’ve learned that a low-histamine diet helps as well. Studying that food list I see that while I had company I indulged in most everything that was on the high histamine list, so that may well factor in. Who knows?

My plan at this point is to extend the duration of each taper step and, especially when next off Prednisone, keep to a low histamine, anti-inflammatory diet longer—i.e., extend those transition steps. Easy does it. 🤞

Sorry to hear you are having a flare. I'm sure it's very upsetting to be feeling well and off of prednisone for
3 months only for the pain to return.
I guess you are taking 20mg instead of a lower dose to control the inflammation quickly?
I wonder if flares are inevitable also. I drove myself crazy trying to figure out what caused my PMR in the first place-physical stress, anger, grief, fatigue, french fries, etc, etc. I think it's important to not beat ourselves up about what we think we did or didn't do to cause PMR and flares.
Pay attention to any correlations but realize we may never know and sometimes these things happen when we age. We are doing the best we can to take care of ourselves.

@kereno On the UK website they say if you have a flare to go up 5mg for a week or two and then taper back down to where you were. Was jumping all the way to 20mg necessary? Did the doctor tell you to or did you make that decision?

@retiredphil - Doctor’s orders post blood work. I tried to avoid Prednisone through diet and supplements suggested by my naturopath. As symptoms got more debilitating rather than less I tried small doses of Prednisone. Symptoms increased daily; even @ 17.5 mg it didn’t alleviate the weakness and pain enough for me to function well enough to go to work at my retirement job. (I live alone and am still supporting myself at a job in my 70’s.) I sought advice through an online doctor I found when searching for Mayo Clinic online (not connected to Mayo, it turns out) who answered my question about untreated inflammation: it can lead to vasculitis (as I recall) and/or GCA. Being a genetic stroke risk and being that my eyes were negatively impacted with this last year on Pred. I caved and gave in to the doctor’s orders. I have to be able to function even minimally. So, in sum, I resisted, giving it the ol’ college try, but in the end went with my internist/PCP who prescribed 2 weeks @ 20 mgs then to start my taper. This dosage works. I like my doctor—she knows I hate to take prescription drugs of any kind. I am grateful to have the steroid—despite its side effects. And most of all, I am grateful for the understanding expressed on this board. Thank you (all) for your support!

@kereno can’t fool mother nature OR PMR!! The UK website has step by step suggestions of tapering prednisone . Getting to the Lowest Effective Dose is complicated but they have it covered!