The lowest effective dose, how is it defined?

"I’ve noticed on this forum that everyone just seems to be on prednisone and no other medication"
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This is true when someone is first diagnosed with PMR. Prednisone is the "first line" treatment for PMR.

After 6 months to a year, doctors start to introduce other medications when someone isn't able to reduce their dose and taper off Prednisone. Not being able to taper off prednisone becomes a big problem because of the side effects when prednisone is taken long term. Even when someone is able to taper off Prednisone initially, people are prone to have relapses of PMR. When a relapse happens, Prednisone is restarted along with other medications to prevent future relapses.

I started with prednisone and no other medications when I was first diagnosed with PMR. During my 12 years on Prednisone my medication count increased to about 15 medictions but most of those other medications were treating Prednisone side effects.

Methotrexate, Leflunomide and several different NSAIDS like ibuprofen, Celebrex, Naproxin and others were used to try to reduce my "steroid burden" as it is sometimes called. Steroid burden is the amount of corticosteroids a person takes over time and the associated health effects. My steroid burden was massive during my 12 years of treatment with prednisone for PMR. I had other autoimmune disorders along with prednisone side effects to contend with in addition to PMR.

A long time ago, sulfasalazine was also tried. It is known as a disease modifying anti-rheumatic drug (DMARD). It was used for one of my other autoimmune conditions but it isn't commonly used for PMR. My rheumatologist wanted to try it for PMR when she was reading my ancient medical records that I had a "good response" to sulfalazine. I told her "my recollection" wasn't what my medical records said. When I told her what I remembered about sulfasalazine, she decided it probably shouldn't be tried again.
https://rheumatology.org/patients/sulfasalazine-azulfidine
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I have been off Prednisone for the last 5 years. I'm now being treated with a biologic DMARD that is working well for me. Biologic DMARDs are another class of medications used to treat inflammatory conditions. They are distinct from conventional DMARDs like methotrexate, leflunomide and others.

Not only did I get off Prednisone --- I have also been able to discontinue about 10 other medications that were treating Prednisone side effects.

For me the lowest effective dose of Prednisone is where I feel able to complete daily living activities inside and outside the home and enjoy some exercise. I don't expect to be pain free being riddled with arthritis but that is manageable pain not the 'hit by a truck' pain of PMR. Obviously it is different for each of us depending on pain tolerance and many other conditions. Progress is progress regardless of how long it takes, the main thing is to keep reducing and avoid bouncing back to higher doses. It took me a long time to get off the afternoon dose of Prednisone, my reductions alternated between day and afternoon over about 12 months until I got to 4mg.

Thanks for the information - very helpful!

Thank you for your reply ☺️ it’s certainly a journey. I keep close to my heart the saying “ This too shall pass “ and hope it’s just the two year span that I’ve read the duration is , fingers crossed.

Thank you, and yes will keep you updated. Just starting a lower dose of the prednisone today for a mth, was 10 now 7.5 (I think I mentioned this ) will keep this dose for another month, and have increased the sulfasalazine to 4 a day , we can only try can’t we. I saw a post re a Dr Megan who has a supplement for people on prednisone, have you heard of this? I’m in Australia so will see if they ship to here 🤔

I'm in Australia too. Those supplements are expensive, $126 Australian dollars plus postage for 30 days supply. They seem like a con to me. For example, there's only 40mg of potassium in it which is miniscule - half an avocado has 350mg potassium and a wedge of rockmelon is 500mg. Her promotion of the pills says potassium can help the body decrease blood pressure. Yes it can, but definitely not with that tiny amount. We're better off getting what we need from food in its natural state and without the pill's additives.

There's a disclaimer on her website:
"These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease."
She's a chemist, not a doctor. I get cranky with people who overstate benefits of their overpriced supplements with no proof that they do what they claim they do. All about the $$$.

Wow, thanks for that, will concentrate on my diet 🤗

Yes, I agree that everyone is different and slow taper is less likely to encounter flares. I started at 10 mg, which is low but worked for me. I am a small woman in otherwise excellent health. The rheumatologist let me choose my taper and I only had two small flares, my back at 1.5 mg and my knee at .5 mg. But I kept to the program and did not go up and they resolved themselves after a few days. I have been prednisone free for a month now with no issues. Fingers crossed!

I first had PMR 10 years ago at which time my tapering from prednisone took 1-1/2 years, with a flare bump 12 months into it. My rheumatologist was reducing dosage @ 5 mgs.

This was my first flare since that time. I am keeping my Dr informed of my tapering pace which I slowed down after reading your posts. Thank you, everyone! I’m experimenting also with (1) the degree I am strictly adhering to my anti-inflammatory diet, and (2) the amount of exercise I am getting. I have noticed my body seems to be telling me when there’s too much drug in my body—lightheadedness and a buzzy feeling, for example. I have been reducing by 2.5 mg weekly or biweekly. The reduction mentioned of 5.5/6/5.5/6 (etc) was really interesting. So far no kick back (I’m currently on 10mg down from 20 mg over the course of 6 weeks). I am especially going to be mindful once I get down toward 5 mg. That’s where I ran into trouble before (10 years ago). Again, thank you all for your input.
Agreed—we’re each unique and our journeys through this will be too. Yet we can share our experiences and broaden the possibilities for others. You betcha!