Where have you experienced pain due to PMR?H

Posted by 23amy @23amy, May 4 11:45am

I was diagnosed last year with PMR by my rheumatologist at the age of 50. I am trying to understand this thing. I'm wanting to know where you all have experienced pain in your body due to PMR.

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@mimi1204

Just curious if you were on prednisone and if so, how long did it take for you to go into remission? I’ve been told that it could be anywhere from a year to two years to be on prednisone. I feel like my PMR is a very mild case because I was started at a very low dose of 4 mg of prednisone and that worked for me. It immediately took my pain away. I’ve been pain free and I’ve been on prednisone since December. I just started tapering down slowly and continue to be pain-free. I’ve dropped the 4mg completely and I am now teetering between 2mg and 3 mg right now, mostly 2 mg with a 3 mg thrown in every now and then. I haven’t had any pain and I’ve been doing this taper for a couple of weeks now. I see my rheumatologist next week and then I will begin to taper from 2 mg to 1 mg and drop the 3mg completely. I’m wondering if I could already be in remission even though it’s only been five months. I’m wondering if this diagnosis is even the right one for me. I never had to go above 4 mg of prednisone and everything. I read from others, everyone has started at such a high dose and then tapered down. I’ve never had to go above 4 mg to control my pain.

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I started on 20 mg prednisone and weaned down to 1 mg over a year with the guidance of my rheumatologist. Then one day I didn't take the 1 mg, my choice. Stayed off it for 5 days. Had minor discomfort but no real pain. So it took me ju@t over a year to go into remission.
God bless!

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@lanieg

I started on 20 mg prednisone and weaned down to 1 mg over a year with the guidance of my rheumatologist. Then one day I didn't take the 1 mg, my choice. Stayed off it for 5 days. Had minor discomfort but no real pain. So it took me ju@t over a year to go into remission.
God bless!

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Thank you for your reply. That’s wonderful for you! How long have you been in remission?

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PMR causes PAIN in all of my joints. It is enough pain especially in my upper extremities that I struggle to put my clothes on. Prednisone is the only relief and I can cut back on the medication as time passes until something causes a flare up. It is a cycle I try to deal with at 82 years of age I am not sure I will actually be cured. I never had this until old age, at least I was never diagnosed until I was about 70.

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When first diagnosed, I couldn't hardly get out of bed. Pain and restricted movement got better as the day wore on. I am a practicing yogi for 25 yrs. I couldn't lift my arms, couldn't do a forward bend. I slept only on my back as I couldn't turn over at nite. Was diagnosed 6wks. later and started on prednisone. I am now at 4mg after 8+ months still have arm and glute pain but much reduced. Arm strength still lacking but range of motion almost 100%. Good luck to you. Our journeys are all different but the support of others is wonderful.

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I woke up at 2:00 suddenly one morning with a soreness in my neck and shoulder. I quickly realized it was in the hips and legs, feet and wrists, arms, elbows and hands—that is, all over. With the pain came weakness. I could barely get out of bed and remembered my husband’s walker was nearby. I was dependent upon it until I got on prednisone 5 weeks later. The only thing that helped was movement so I paced my little house for 1/2 hours at a stretch. It was difficult and painful to lie down so I rested on a chair or sofa—but how to get up? Pulling myself by draping my upper body over the walker and pivoting my weight until I reached an upright stance. My hands were too weak to open a tube of toothpaste. I couldn’t raise my arms. I dressed by dragging a shirt to the bed and leaning down, then wiggling myself into it. I don’t know how I got through that period. The more I moved the better I felt. Later in the daytimes I could move well enough to email my doctor and naturopath. My chiropractor was no help—hurt me worse. I could drive myself to the pool and the lab for bloodwork. My SED rate was borderline so I had to return a few days later when they could prove my inflammation and could prescribe the steroid. My naturopath took me off turmeric-curcumin and boswelia and put me on a Mediterranean diet: no sugar or refined flour, whole grains, fresh fruits and vegetables. I knew that motion in the water was therapeutic, so I pursued it 2-3 /week. Once on prednisone I was able to function again, but I had difficulties getting in. While we each have our own journeys in this we have commonalities as well. What was your experience?

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I am in the process of being diagnosed. I woke up one day and thought I had the flu for three days, but I had no fever. Just some of the worst body aches I’ve ever had.
My nurse practitioner put me on a six day steroid treatment and I felt much better. Today is my last day and I’m feeling a flareup. The pain is in my shoulders, my neck, my butt, my knees, my fingers, and even my feet!

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@johnbishop

Welcome @23amy, I think you might find this discussion started by @dadcue helpful for learning more about PMR.
-- Comprehensive Overview Of PMR: https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/

You mentioned being diagnosed last year. Were you started on prednisone or other treatment? Did it provide relief for your symptoms?

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My rheumatologist started me on 20mg prednisone & Kevzara shots. Yes as long as I take the steroids my pain is minimal but when I started lowering my dose I had a flare up.

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@23amy

My rheumatologist started me on 20mg prednisone & Kevzara shots. Yes as long as I take the steroids my pain is minimal but when I started lowering my dose I had a flare up.

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Tapering off of prednisone and managing the PMR symptoms can be challenging. Keeping a daily log of my level of pain (0 to 10) and my dose of prednisone helped me during my tapering. If my level was 2 or above I either waited a few days to see if I felt better before tapering down or I went up half of my previous taper so that I wouldn't be going all the way back to the previous dose. There is another discussion on the tapering topic that I really found helpful and hopefully you will too.
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/

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@grandmap

I am in the process of being diagnosed. I woke up one day and thought I had the flu for three days, but I had no fever. Just some of the worst body aches I’ve ever had.
My nurse practitioner put me on a six day steroid treatment and I felt much better. Today is my last day and I’m feeling a flareup. The pain is in my shoulders, my neck, my butt, my knees, my fingers, and even my feet!

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Anything changed medication wise? Are you taking a statin?

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@rhb80

Anything changed medication wise? Are you taking a statin?

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I just started the maintenance dose of prednisone yesterday. No other changes in meds. I had my most severe pain in my shoulders, but it seems to travel to different areas, including my tailbone area, now. as well as my wrists, neck, elbows, fingers. Don't really know what to expect, but this sure is different from anything I've ever had!

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