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.

Those who said the lowest effective dose was a moving target are right. My only flare so far was about 8mths ago at 6mg of prednisolone. The first pain came in at 6.5mg but was tolerable so I continued to reduce to 6mg, after which pain was 5-6/10 and inflammatory markers rose. My delay of a month or so sitting on the 6mg hoping it would get better (it got slowly worse) was the mistake which resulted in the inflammation settling in, so I had to return to 15mg briefly and start the reductions over.

This time I've made it to 6.5mg with zero pain. My doctor says to stay on 6.5mg a week or two longer than last time before slowly reducing to 6mg. Sounds good to me, fingers crossed. Pushing on after tolerable pain started has given me a higher cumulative dose of prednisone, not something I want to repeat. Slowly slowly now.

So the earlier lowest effective dose for me was 7mg. Now I can say for sure it is 6.5mg or lower. Progress.

That 7 mg dose of prednisone was so difficult for me to get past. I’m truly amazed how many people have flares at or around 7 mg of prednisone. That dose corresponds to the physiological dose which translates to the amount of cortisol the body needs every day.

It might be time for some type of steroid sparing medication. It doesn’t need to be what I took. My endocrinologist said if I could maintain a 3mg dose of prednisone for an extended period of time that would help with the recovery of my adrenals. Sure enough… staying on 3 mg of prednisone for months did improve my cortisol level. Lo and behold … I didn’t even need to taper my prednisone dose from 3 mg to zero after my cortisol level improved.

The medical mob now says the physiological dose is around 5mg (4-6) rather than the previous estimation of 7-8, but cortisol levels for individuals vary. I intend to reduce the cumulative dose of prednisone by going more slowly with reductions rather than pushing on and increasing pain & inflammation which requires a dose rise. At this stage, my doctor is as reluctant as I am to add another drug with new side effects, especially considering the low rates of success in reducing prednisone that most "steroid sparing" drugs have for most people.

And then there's seeing if the PMR has resolved, which should mean that inflammation stays under control while pred is reduced. But each of us has our own medical history that independently determines our inflammation levels and predisposition to inflammation, whether from poor diet or lifestyle, or things like latent tuberculosis, which I have. Latent TB means the immune system is permanently patrolling to control TB, making us more prone to inflammation, and more at risk of developing full blown TB by taking either/both prednisone and "steroid sparing" drugs.

Interestingly, the most obvious way to increase naturally produced cortisol is to return to the highly stressful life I had which kept cortisol and adrenaline at constantly high levels for years. (I now take a beta blocker to control adrenaline.) Should I postpone plans to start meditating next year, as that reduces cortisol but brings many health benefits? It's not a simple equation - I hope that meditating might reduce my body's need for so much cortisol, but mainly, I just want to feel better, more peaceful and more healthy.