What steroid dosage did you start on? Did you find the right dosage?

I began with 20mg (5/13) of prednisone and got some relief but there was still some pain and muscle stiffness. Doctor said to increase to 30 mg. (5/30). Pain was gone in a day. I have slowly tapered prednisone and am now at 12.5mg. When I get to 10mg, taper will be very slow, 1mg per month with the goal of 0. Of course, so much depends on my body’s reaction. So far no flare ups. Dr did say that if I experience a flare to go back to previous dosage for a while. I am seeing her in 10 days. I agree that you should probably talk to a dr before increasing your dosage. So sorry that you are having trouble getting through to a doctor.

I relate to that, I am rural as well. The only clinic in town has five doctors and a very good PA. The closest hospital is almost a hour away on a 75mph highway. I try to avoid that.
Being immune compromised in part means you need to avoid getting any infection, cold, flu, viruses. i mask the rare times I go out, have groceries delivered since early 2020 and wash what comes into the house. It's just routine now but I've not been sick. So win-win. Take care.

That makes sense, if you feel the pain is bearable. It’s such a tough situation to be in when you can’t get in touch with someone who can help immediately.

15 mg may not be high enough for PMR, so it’s great you have a plan to connect with your care team and take new labs. It’s sometimes considered on the lower end. My dad started at 20 mg, which had an immediate noticeable improvement, but he was clearly still symptomatic. Within a few weeks, he had a stroke that may or may not have been related to GCA (which often occurs with PMR and is a risk factor for stroke if not treated quickly or well enough). Around that time, he had a huge spike in his ESR (one measure of inflammation that often is a sign of PMR) and he had to go up even more. Despite the side effects to prednisone (and we are VERY leery of side effects), the risks of unchecked inflammation and the long term effects of changes to the nervous system from chronic pain due to the PMR were much worse =(

We’re not in a rural area, but it is still very hard to get in immediate touch with someone to advise on the medication. We’ve become accustomed to making adjustments to the prednisone in our own in response to a flare, once we got used to the patterns of waxing and waning especially with tapering. Depending on the situation, we just ended up deciding based on the severity of my dad’s pain (sometimes we could wait, sometimes not—we learned the hard way that as the patients we bear the brunt of the consequences no matter the reason a health care provider isn’t available or doesn’t believe us, so whatever decision we make, we’re the ones who end up living with it =\…i.e. the stroke) or wasn’t worth waiting 5-7 days if we were only going to adjust by a few milligrams. Of course I’d eventually send his rheumatologist a message to let her know; so far every time this has happened, by the time she gets to the message some 2-5 business days later she’s fine with it.

But you know your body best and eventually hopefully you and your care team will sort things out, I’m hoping for you.

If it helps at all to know, he also takes alendronate. He wasn’t diagnosed with osteoporosis, but it was prescribed as a precaution because PMR requires long-term prednisone. So far things have been good—no noticeable signs/symptoms of bone loss, fingers x’d.

Good luck to you!

Your doctor should be aware that any bone loss due to corticosteroids is reversible. It is of the utmost importance to keep the inflammation under control.
"Do bones recover after prednisone?
Loss of bone mineral density occurs rapidly but can be reversed. Bone loss appears to be greatest in the first two to three months of corticosteroid use.".
It seems I just parroted what emo posted.

Is steroid-related bone loss reversible? I haven't run into this, other than a small study involving patients under 45. Most of us with PMR are considerably older.

This article/post mentions it, and has sources at the end of the article. It’s also medically reviewed: https://www.healthcentral.com/condition/osteoporosis/steroid-induced-osteoporosis

And at the end: “ Other alternatives to oral corticosteroids for autoimmune conditions include methotrexate (Otrexup) and azathioprine (Imuran). However, people with certain autoimmune conditions may need steroids to help manage their symptoms. If that’s the case for you, there are steps you can take to protect your bone health.”

There are alternatives, but methotrexate, NSAIDs and biologics, or undertreating with prednisone also have their own risks =\

Prednisone and osteoporosis are concerning, but depending on the situation the risk of not addressing the inflammation from PMR can be greater, like most things? PMR is one of the few autoimmune conditions with a fairly straightforward treatment regimen, though it’s a challenge to implement and not everyone is a responder.

Most rheumatologists are accustomed to managing the risks of medications; I would hope that would be the case that you’ll be able to talk to your doctor, fingers x’d. My dad’s rheumatologist specifically brought up the concern to us, and suggested options.

This article suggests that only one in four with diagnosed PMR are taking supplements od vitamin D and calcium to protect their bones.
https://evidence.nihr.ac.uk/alert/polymyalgia-rheumatica-treatment-reviews-and-falls-assessment/
I need to be careful about a fall, I get dizzy quite often, especially after leaning over or bending down. Further, I am also still losing weight. It's something I do when stressed. I see my doctor again on July 11.

Before diagnosis, my dad lost about 10 pounds because he felt so poorly he didn’t want to eat, and got so dehydrated he got diagnosed with acute kidney failure =(

He does take vitamin D, Centrum and the alendronate.

Hope your doctor is helpful!

In March 2023, Diagnosed with PMR. Started with 15mg per day for 1 month, April moved to 12.5 mg, May moved to 11mg, June moved to 10mg. July moved to 9mg, but am having flare ups...

Hi @bruce1951vet, It took me 3 and half years to taper off of prednisone my first time with PMR. I started at 20mg dose and didn't taper as fast as you have been doing. My second time with PMR six years after it went into remission, I started at the same 20mg dose but was able to taper off in 1 and half years. It is different for each of us but what I believe helped me get off quicker was making a few lifestyle changes, especially eating healthier, trying to eliminate most sugar and inflammatory foods along with some mild to moderate exercise daily.

Another thing that helped was keeping a daily log of my pain level when I woke up and my dose of prednisone for that day. That allowed me to work a little closer with my rheumatologist on a tapering plan. When it was time on my tapering plan to taper down, I didn't taper down if my pain level was more than a 2 on my scale of 0 to 10. If the pain flared, I sometimes increased my prednisone dose to half of the previous taper to see if that made the pain disappear.

Do you keep a daily log?