1. < Polymyalgia Rheumatica (PMR)

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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rhb80 | @rhb80 | May 16 8:09pm
In reply to @grandmap "I just started the maintenance dose of prednisone yesterday. No other changes in meds. I had..." + (show)
@grandmap

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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Mine started from an increased dose of Crestor from what I had been taking for years. I stopped the Crestor after 20 days but my pain remained for over 5 months. When my PCP suggested that I might have PMR and if so my discomfort should subside in 3-4 days with prednisone. 15 mg/ day for 3 days and I felt normal again. Slowly being weaned so as not to get a relapse with blood draws ever 3-4 weeks to check send rate and CRP levels…..good luck

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mezack25 | @mezack25 | May 17 12:14pm
In reply to @grandmap "I just started the maintenance dose of prednisone yesterday. No other changes in meds. I had..." + (show)
@grandmap

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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Absolutely agreed. It’s just horrible.

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groksvaag | @groksvaag | May 18 3:00pm

Have had PMR since November. Pain and stiffness started in hips. Next involved shoulders. That was worst pain I have ever had. Diagnosed and responsive to prednisone in 8 hours. Now on 15 mg prednisone per day and week 9 of Kevzara. Have stiffness in hips and shoulders and back of neck. Pain is minimal. See rheumatologist on Wednesday. 🤓

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markevie01 | @markevie01 | May 19 5:19am

I was diagnosed 2 years ago when I was 57. I am a male who was fit, running each day for many miles. The pain before diagnosis was excruciating pain in knees,shoulders,groin ,including pain in wrists and hands. I started on 40 mg prednisone and now on 1mg and staying here for a bit. I have encountered two flares both when tapering from 5mg . I wish you well and remember to stay positive however hard life may be. You will get over this horrible disease

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farnhamlaf1 | @farnhamlaf1 | May 19 9:56am

My pain started in mid back up
To shoulders a neck. Full blown, down toward my hips
Now just shoulder stiffness and chest stiffness. Have trouble taking deep breaths.
Have tapered from 20mg to 8 at this point. Also taking Methotrexate once a week.
Trying out mineral salts an that has definitely reduced stiffness

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rllh5403 | @rllh5403 | May 19 5:13pm

I was diagnosed 13 years ago in my late 50's. My pain is mainly in my shoulders. Thankfully, I am able to treat it with massage pillow or Aleve. I hate Rx meds due to all the side effects. A day may come that I will have to take medication, but at the present time I don't. I will say PMR sometimes goes into remission.

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trishwrite1 | @trishwrite1 | May 20 11:03am

It started in painful hands then moved into legas and hips. I was in a wheelchair chair before diagnosis and starting Prednisone.

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trishwrite1 | @trishwrite1 | May 20 11:08am
In reply to @allinge "My pain from PMR goes into my calves, all the way up the back of my..." + (show)
@allinge

My pain from PMR goes into my calves, all the way up the back of my legs, up to my waist and then into my arms, and across my back and shoulders. It can be so painful that I can't bend down to pick up anything off the floor. When I was first diagnosed with PMR, it was after I woke up and was in so much pain, I couldn't get out of bed, nor walk unassisted and my husband had to dress me so we could go to emergency. It's been 3 months now and (thank God) I haven't had a fare up in weeks. I'm slowly trying to decrease my daily dosage with the help of my doctor. I want to be optimistic but I know this will take time and that I may have to deal with it for years to come. But never give up!

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There's a PMR support group on Facebook and most people report onset as coming overnight for no known reason. Hang in there.

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trishwrite1 | @trishwrite1 | May 20 11:10am
In reply to @23amy "I was prescribed 20mg prednisone & Kevzara. Yes it helped but I went from 175lbs to..." + (show)
@23amy

I was prescribed 20mg prednisone & Kevzara. Yes it helped but I went from 175lbs to 196lbs. I tapered down to 5mg but had to increase to 10mg due to flare ups.

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Getting below 8 mg was hardest for me. Hang in there.

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gehrman | @gehrman | May 20 11:13am

My pain was in my back. Everywhere from below the waist up to and including my shoulders. On my left side more than the right.

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