The lowest effective dose, how is it defined?

That's interesting @pmrsuzie
It seems like 5mg may be your lowest effective dose? Would it be best to sit on that dose for a while longer to stabilise things and take things more slowly, or did you kept reducing beyond that at the same rate? I'm wondering if there is a way to reduce the necessity of keeping going up and down.

Staying on that lowest effective dose would reduce the cumulative dose, at least. I'm hoping to learn from people who have tried different things, as you seem to have done. Was it your doctor who pushed you to keep reducing beyond 5mg, or did you decide on the reduction schedule yourself?

Since this past spring I have been up and down a few times because of my hand problem, not the pmr. My rheumatologist wanted me to go to 10 mg for 2 weeks, 7.5 mg for 2 weeks, then stay at 5 mg. It did not work but I did what he suggested. My hands got better then worse. My crp was up to 24 and my wbc count was 17,000. My hands were swollen, stiff, warm to touch, could not make a fist. I had a lengthy appt with my rheumatologist and a new Dr - a 'fellow' in training. We discussed why this was happening and a plan. He said the 'tapering' can 'trigger' the kind of response I was having.
I'm in my 5 th year of this. My direction all along has been tapering 1 mg/ month at 10 mg. The pmr symptoms have escalated a couple times when I reached 5 mg or lower. I am now taking my entire dose in the morning. Before I was splitting the dose. Getting down to 3 mg made the tapering difficult. I was down to 1 mg morning and evening.
At this last appt I agreed to try methotrexate. Both Drs were in agreement that I needed more than prednisone. I agreed to try methotrexate but have since talked myself out of it. I'm 74, had a lot of medical problems throughout my life and am very nervous about mtx triggering a worse problem.
I'm pretty confident I can get down to 5 mg with no relapse, next appt is in Oct.
I am thinking I should slow the tapering once I reach 5 mg this time. My xrays show definite osteoarthritis in both hands and arthropathy consistent with cppd. My hands are significantly better for now. I am altering my diet, doing some therapy with exercise and heat and cold packs. One day at a time.
suzanne

Since this past spring I have been up and down a few times because of my hand problem, not the pmr. My rheumatologist wanted me to go to 10 mg for 2 weeks, 7.5 mg for 2 weeks, then stay at 5 mg. It did not work but I did what he suggested. My hands got better then worse. My crp was up to 24 and my wbc count was 17,000. My hands were swollen, stiff, warm to touch, could not make a fist. I had a lengthy appt with my rheumatologist and a new Dr - a 'fellow' in training. We discussed why this was happening and a plan. He said the 'tapering' can 'trigger' the kind of response I was having.
I'm in my 5 th year of this. My direction all along has been tapering 1 mg/ month at 10 mg. The pmr symptoms have escalated a couple times when I reached 5 mg or lower. I am now taking my entire dose in the morning. Before I was splitting the dose. Getting down to 3 mg made the tapering difficult. I was down to 1 mg morning and evening.
At this last appt I agreed to try methotrexate. Both Drs were in agreement that I needed more than prednisone. I agreed to try methotrexate but have since talked myself out of it. I'm 74, had a lot of medical problems throughout my life and am very nervous about mtx triggering a worse problem.
I'm pretty confident I can get down to 5 mg with no relapse, next appt is in Oct.
I am thinking I should slow the tapering once I reach 5 mg this time. My xrays show definite osteoarthritis in both hands and arthropathy consistent with cppd. My hands are significantly better for now. I am altering my diet, doing some therapy with exercise and heat and cold packs. One day at a time.
suzanne

@pmrsuzie
I had my first symptoms in January 2023. My biggest issue is in my fingers and hands. Of course the stiffness and pain are intolerable in the morning. No swelling. Most of the time by days end I can barely close my fingers and make a fist.
I take my prednisone in the am , 5mg and 7.5 mg meloxicam at night. I am taking 6 Advil tabs per day to alleviate my left shoulder pain . It seems to help but I can’t stay on Advil due to my other meds. See rheumatologist Thursday. Hope he can get me some relief and stability. Wishing you the best,
Blessings

An "effective dose" takes into account a variety of factors. It isn't only about pain. Even if it was only about pain --- the amount of pain people tolerate varies widely. I like to think I can tolerate pain. Some days I just need to do something about the pain more than other days.

My rheumatologist gave me some guidelines to follow but nothing was set in stone. The principal she went by was that I should find a "stable dose" of prednisone that worked for me. She didn't want me to abruptly change my dose without a good reason and she wanted to be included in the decision making.

She said adjusting my dose should be done in smaller increments especially when under 10 mg. Going up or down by 1 mg was okay as long as the overall trend was down. If the trend was going up than that caused her some concern but she didn't make me feel guilty. She just wanted to investigate what else might be going on.

There wasn't a set period of time when I had to be on 0 mg. She said treating PMR would likely be a long process. Maintaining a stable dose was most important but she expected it would be years before I could taper off. It ended up being 12 years.

After about 2 years my rheumatologist starting introducing other medications to get my prednisone dose lower. Some of those other medications had varying degrees of success too.

Everyone has a different kind of maze in terms of underlying health conditions, side effects, pain tolerance just to name a few of the many factors involved.