Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

These are questions that I am still trying to answer after 9 months on prednisone. I started on 20 mg and had zero pain or symptoms until I got below 10 mg. Starting at 9 I had some pain throughout the day but not bad so continued my taper, dropping 1 mg every 3 weeks. I thought that this might be old pain that I have had for years coming back or just my body needing to start making cortisol again. By the time I got down to 6 mg I was in some serious pain and ended up having to go back up to 10 mg and start the taper again. This time I am down to 7 mg with a drop of 1 mg every 4 weeks. I hurt when I wake up in morning but feel pretty good when the prednisone kicks in after a couple of hours. If pain gets any worse than this I will call my rheumatologist and ask to either stop the taper or increase the dose again. My conclusion is that I should not ignore pain that the prednisone cannot control, ie lasts all day. A retired MD I know advised me not to ignore pain and other sx's of PMR because I'll just have a flare-up. I think he is right.

It took me 2 months of terrible mornings before someone suggested that I split the meds. I would suggest you try 10mgs in the morning and 5mgs in the evening. It was a game changer for me. My doctor said it was unorthodox but to go with what works. PMR is now in the “background “ and quite manageable.
Frank

Emma 32, I found that the initial high dose of prednisone did wonders for no pain at all and, in fact, being able to touch my toes for the first time in years. As I have tapered down to 5 mg in five months, I too have the discomfort and stiffness in my arms and hands first thing in the morning. However, I am trying to live with it and get off prednisone entirely before my hair finally falls out. Oh vanity, thy name is woman!

No one wants to increase prednisone, but if you let the inflammation accumulate, you'll wind up with a flare. It may be that you need a higher dose (maybe 20 mgs) to achieve comfort. Once you are comfortable for a month, you can try to decrease slowly to find the lowest level of prednisone you need to achieve the comfort you experienced with your initial dose (provided your initial dose was enough to give you comfort). I had complete relief with 15 mgs. and some discomfort when I dropped to 12.5. I probably should have stayed there longer, but continued to drop 1 mg. at a time until I got to 10. I've been up and down from 10 over a year or more. Currently at 11-12. Everyone is different and you have to find what works for you. Slow and sure, but your body dictates your taper.

It sounds like you might need to go higher than 15mg for a while - until the pain is all gone. Then you can start tapering down - maybe a bit slower than you have been. Lots of doctors tend to stay with the 1mg per month taper. But for some of us, that is too fast or too much or both. You have to listen to your body. Only you know what you are feeling. But either way, if you start feeling pain again, then the taper is either too fast or too much.

Your posting sounds very familiar. PMR diagnosed six months ago. Started on 20 mg, then 10 mg. Started 9 mg early May, and my pain/stiffness returned. It subsides after 1-2 hours. I’m eager to taper to 8 mg to see how it impacts my pain level. At this point I would be willing to deal with the 1-2 hour morning pain if I could get off prednisone. I look forward to more updates from you.

My pain and stiffness only subsides with pred. I never "warm" out of it. So you are already ahead of me there. I do not care for side effects, either and my glaucoma is worse in spite of eye doc's best efforts. But as my rheumy said yesterday, "It is what it is..." I am interested in your tapering schedule. My doc does 4 mg at a jump and I think it is too abrupt. I think it should be 2mg max. I am going to talk to him about that.

How old are you and is this your first encounter with PMR? I am 75 and have always been active. (Ride horses) I was first treated in my late 40s but was never given a diagnosis. Tapered to 5mg every other day then weaned off after about a year and a half. So when it returne in 2017 after being on steroids for a bad Crohn's flare, I didn't know what was happening. All I knew was, one week I could pick up my 35lb saddle and put on my horse's back and the next week, I couldn't becauses my muscles hurt. Legs were really stiff and weakend, too. First rheumy didn't have a clue and spent 4 yrs on him. Don't make that mistake. I did discover Low Dose Naltrexone, 'though. If you have pain when you aren't moving.(ie: trying to sleep) I really reccomend it. Also, good for immune system. Stay in touch on your journey. Much to learn and share, here.

Trying to figure out if I have PMR so looking for help on symptoms others experienced before diagnosis. Firstly I will mention that in mid-2019, I started having periodic headaches at my left temple. To rule out GC arteritis, I had an ultrasound of temporal arteries and biopsies on each side of my head, both negative. My SED and CRP were normal. I recently had another temporal artery ultrasound which was normal. The headaches have continued to today but doctors rule out GCA because of my test results.
In late January 2022, I got Covid. After 5 days I had severe body aches in my arms and legs for two months. The pain level went down for a while, but about 3 weeks ago I started having very bad pain at the back of my head and neck, upper arms, and sometimes upper legs that last all day. I have muscle knots in my neck and shoulder blade area. My Dr prescribed a low dose muscle relaxant med which helped for about one day and now doesn't seem to do much. Tylenol helps a little.
Along with that, the left sided headaches come and go throughout the day. It seems I either have intense pain at my upper neck or a bad left temple headache. I don't have jaw pain or vision issues. Recent blood work shows my SED rate went from 15mm in April to 5mm and my CRP went from below .04 to below .20 since April. Recently my lymphocytic colitis flared up, so that could have caused the raised CRP.
I saw a rheumatologist a month ago, before my body aches started becoming intense. It's a long wait to get another appt with him or any other rheumatologist. I have also been seeing a neurologist and have a video appt with her in 3 days.
Can a family practice doctor treat PMR and Arteritis, or is a rheumatologist or neurologist preferred? What tests did others have to diagnose PMR? Thanks.

I also should mention that my pain is not in my joints, but in the muscles. For instance, I have no problem raising my hands above my head.

As per @fjn's post, I too have tried splitting to daily dose - 10mg morning, 5 mg at bedtime (with a bit of food). Seems to have made a noticeable difference in my morning stiffness/pain. Goes against generally accepted wisdom, but you might like to give it a try for a few days.