How to Slowly and Safely Taper Off Prednisone but ... no set rules.

I remember reading that pain when you first wake up that diminishes later in the day is one of the diagnostic symptoms of PMR.

I have been tapering for a few weeks now, and so far, so good. It is a long process--almost 52 weeks if I taper until the end of the process (began tapering at 5.0 mg a day). My question is the following: If I get down to 1 mg. a day, should I quit taking prednisone and then wait to see what happens. Each .5 reduction is spread over a 6-week interval. A doctor told me that our bodies make 5 mg. a day but when on prednisone, I believe it quits making prednisone at some point--and that is why we have to taper slowly.

I am still taking Actemra for GCA and PMR, but I stopped prednisone in the middle of August after being at that level for 4 weeks. After I stopped I had a few weeks of prednisone withdrawal - fatigue, sleep problems, and feeling depressed or irritable. But it seems like I've gotten past that now. Hopefully you won't have those problems since you will have taken a lot less prednisone than me.

Not to be discouraging, but I don't know what percentage of people with PMR can stop prednisone in one year or less without taking a biologic drug. Here's what google AI says:

While some people with polymyalgia rheumatica (PMR) can stop prednisone after one year, it is not typical, and the majority will require treatment for a longer period. Studies show that only a small percentage of patients are able to discontinue the medication by the end of the first year.
Reasons most people cannot stop after one year
Disease course: PMR is generally a self-limiting disease, but its active phase can last between one and five years. Many patients need medication for at least 1 to 2 years, or sometimes longer.
Relapses: Relapses are common, especially when tapering the dose. Some research suggests that up to half of all PMR patients will experience a relapse. In some cases, relapses can occur more than a year after stopping the medication.
Tapering schedule: Healthcare providers guide patients to taper off prednisone slowly to prevent withdrawal symptoms and disease flares. A common tapering goal is to reduce the dose gradually over one to two years.
Concurrent conditions: PMR can be associated with other inflammatory conditions, such as giant cell arteritis (GCA), which often requires a longer, more aggressive course of treatment.
Predictors for longer therapy: A patient's initial prednisone dose may be a factor. A study published in The Rheumatologist found that a higher starting dose was associated with lower odds of successful discontinuation after one year.

"A doctor told me that our bodies make 5 mg. a day but when on prednisone, I believe it quits making prednisone at some point--and that is why we have to taper slowly."
-------------------
The above statement is somewhat correct. However, the naturally occurring hormone that our bodies produce is called cortisol. Explaining everything that cortisol does is complicated. The following link explains it better than I can.
https://my.clevelandclinic.org/health/articles/22187-cortisol
-----------------------
Cortisol is a corticosteroid

Prednisone is another corticosteroid.

Our bodies don't produce Prednisone. It is a synthetic chemical that is very similar to the naturally occurring hormone called cortisol. Prednisone is a substitute corticosteroid prescribed by doctors to manage inflammation by mimicking cortisol's anti-inflammatory and immunosuppressive effects. Taking prednisone causes the body to decrease or stop producing its natural cortisol.

Prednisone mimics the effects of cortisol but, with prolonged use, it causes the adrenal glands to suppress or stop natural cortisol production. However, the body needs a certain level of corticosteroid activity, which is provided by either natural cortisol or the prednisone medication.

Cortisol is NOT instantly turned back on after we take Prednisone for a long time. That is why we taper off Prednisone slowly.
https://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/expert-answers/prednisone-withdrawal/faq-20057923
-------------------------------
The problem is ... at lower doses of Prednisone (approximately 5 mg or less), the symptoms of a low cortisol level are very similar to the symptoms of PMR. It is very hard to know if PMR is still active or the symptoms are the result of a low cortisol level.

It can be extremely difficult to distinguish between a polymyalgia rheumatica (PMR) flare and adrenal insufficiency (low cortisol) when on low-dose prednisone (5 mg or less). Both conditions share many overlapping symptoms, such as fatigue, muscle and joint pain, weakness, and loss of appetite.

@nancy53
Can you share more about your initial reduction from 20mg?
Thanks

@lglowac

I thankfully can say that's a distant memory now. It's been a year since I finally got off the meds.

The thing to be aware of is how important tapering slowly is. Don't be discouraged if you have to go back up a bit during the process. I would be in so much pain that I just couldn't imagine dropping another .5 mg. Prednisone was so vital to easing the pain of PMR.

The most important lesson I learned throughout the process was PATIENCE. As I said, it took over a year to completely stop. After a year now of no meds - I am fully in remission. Exercise and an anti-inflammatory (mostly) diet have kept me symptom free. Thank God.

Best wishes to you.

The first time, I was prescribed 20 mg for five days and then off. After two days, I was in Urgent Care with pain spiking at an 8 with any movement at all. Prescribed 20 mg for 5 days then down to 15mg. Again, pain spiked 2 days after decreasing. Just finishing 10 days of 20 mg today. Plan is to drop to 17.5 tomorrow and if that doesn't work, go to 19mg. Seeing Rheumatologist for fist time in 2 weeks so just trying to hang on until then. I still have a lot of pain for 4 hours after taking my 20 mg in the morning so not sure I understand why we are going down and not up but will try to follow instructions.

Almost 2 years - stored from 20 to the current 1.5 mg. At the beginning of next week I’ll vary 1.5, 1, 1.5, 1, 1.5, 1, 1.5 - then go to 1 mg daily for the next 3 weeks.

Almost 8 weeks ago we were hit by a drunk driver (mid-morning no less) and I was so concerned that the pain from 9 fractures and resulting anxiety and stress might cause a flare. I am very fortunate that I have remained stable (so far) during my recovery.

What a gong show this prednisone ride is! What causes us to get this inflammation disease. For me I think it was the stress of life hitting hard and having handled it so poorly all these years at age 64. And then one day I couldn’t lift my own leg to get in my vehicle! I reduced to 2 mg recently and feel some uncomfortableness coming on, but I’m going to persevere and try to drop to 1 mg here in a month, and then to zero a month after that!