The lowest effective dose, how is it defined?

It is confusing. The Dr’s advice of going back to 5 mgs for a month then taper to 4 mgs, or the alternating days amount wasn’t exactly helpful as in what’s the best course of action? I wish I had quizzed him more thoroughly!
But I thank you for your response. It helps me understand a little more this new world I’m living in. Time for me to invest in a notebook to note daily details of mgs, pain levels, fatigue & energy levels.

That's a very fast reduction schedule at 1mg every two weeks, especially under 5mg. Most often reductions are made every 4 - 8 weeks to avoid pain, give the PMR time to resolve, and give your body time to resume its own cortisol production. Your doctor's suggestion to return to 5mg and then alternate 5mg with 4mg would give a reduction of .5mg rather than 1mg, which makes sense if you have pain returning. Reducing by smaller increments and taking it more slowly is usually better.

I started at 10mg by my PCP, then increased to 15mg by Rheumatologist. After one month decreased to 12.5 after another month decreased to 10. Then decreased 1mg every month after to zero. At 5mg I started having pain in my hands and wrists. Dr said blood tests were normal and xrays indicated osteoarthritis. After three weeks completely off of prednisone I couldn't make a fist or get dressed anymore. The medical facility no longer accepted my insurance plan so I had to find a new Rheumatologist. She said I decreased too fast and put me back on 10mg. After one month decreased to 5mg/10mg every other day for two weeks then 5mg for four weeks. Then decreased to 4mg/5mg every other day for two weeks then 4mg for four weeks. So far no pain or swelling has returned.

Thank you. I needed to hear that. I was responding so well since initial 15 mg to the 5 mg in 5 mo scenario. I was just so bummed when 4 didn’t help. I will try to alternate between 4 & 5 for the month of Sept. see what happens. Dr. is saying taper monthly rather than every 2 weeks. I’ll see him in Dec for blood labs again (which have looked good so far).
Again, thanks for your response.

Thanks Megz for sharing all your knowledge. My experience in PMR kind of mirrors yours. After starting prednisone at 10 mg I can’t seem to get any lower than 7. I have flared twice and the second time I was out 8 weeks on 8 mg. I am increasing tomorrow back up to 8 mg to try to give some relief from the stiffness and pain. My Rheumatologist told me just to stay on the 8 mg for awhile and try to taper later. He has mentioned Kevzara but I want to keep trying prednisone tapering if I could do it correctly. Would you have any recommendations on my taper going forward?

Have you seen the various graduated reduction schedules? They can give a 1mg reduction in 7-8wks reducing by .5mg at a time, but with a softer more gradual taper. For example, this is my reduction schedule. An 8mg reduction would go:
WEEK 1: 8mg / 7.5mg / 8mg / 8mg / 7.5mg / 8mg / 8mg
WEEK 2: 7.5 / 8 / 7.5 / 8 / 7.5 / 8 / 7.5
WEEK 3: 7.5 / 8 / 7.5 / 7.5 / 8 / 7.5 / 7.5
WEEK 4: Stay on 7.5mg to stabilise and monitor for pain

Others have shared their variations on graduated reductions. Some go straight to alternating days of the existing dose with the new dose to give a .5mg (or 1mg) reduction over a couple of weeks or more.

Do you record your daily morning pain levels on a 1-10 scale to keep an eye on changes as you reduce? It was a suggestion I found here at Mayo that has been very useful. For now, staying on 8mg to stabilise for a while as suggested by your rheumatologist sounds sensible. I do hope you find a graduated reduction schedule that works for you. Keeping inflammation under control consistently without flares seems to be key in getting over PMR.

I do keep track of my pain levels. I sure appreciate the detailed response. This is a great forum and people like you are very kind trying to help others.

Also, typically how long do folks stay on the increased dosage when people flare before trying to taper down again?

The tapering is all very confusing.

I had no pain at all until I lowered to 8. Then a little pain. At 7, more, so I went up to 7.5. Then down again to 7. I'm at 6.5 now and have had some great days and bad days. I could live with this amount of pain for the rest of my life but I want to get off the dang prednisone and so I'm trying to taper.

My question has always been, am I hurting myself if I continue tapering while I have pain? Eventually, I may taper to a point where I can't stand the pain. Until then, am I hurting myself?
Frustrating.

Thank you to the suggestion of different dosages on different days. I may try 6.5, 6.5, 6 ect. Will talk to doctor of course, but thanks!

The answer is that you could be, but it is very confusing, as you said. If the pain that you are experiencing is due to steroid withdrawal, then it should alleviate after several days at the new lower dose. But how long that is going to take will vary from individual to individual.

But if the pain is from PMR inflammation, then staying at a lower dose is unlikely to be effective over the longer term. The pain rather then alleviating over time will possibly increase as the level of inflammation builds up. This is simply because you are not taking enough prednisone to control the level of prednisone produced by your body on a daily basis. Pain nearly always results in reduced movement and that will contribute to muscles weakening over time. If there is GCA/LVV with the PMR, then not getting the correct dose to control the illness completely becomes more critical because of eyesight or aorta damage.

It is all further complicated by the fact that the IL-6 inflammatory is thought to play a major role in the pain from steroid withdrawal and that is one of the primary inflammatories in PMR.