How did your PMR begin?

Posted by ctjpmarie @ctjpmarie, Apr 13, 2023

In trying to understand PMR-( my husband has it) …I’m curious to know -if any of you had anything specifically stressful, going on in your life, at the onset of PMR? You know-besides, the normal day-to-day stressors of life?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@jennywren

My PMR started in the summer of 2019. My doc didn't diagnose it, only treating me with painkillers and Ibuprofen. After a few weeks I thought enough is enough. I then went privately and was diagnosed with PMR. I was started on the usual dose of 15mg of Prednisone and within an hour my pain was gone. Sadly, I was told to taper far too quickly and in the March of 2020, GCA appeared. So up I went to 40mg and have been tapering ever since. My rheumy wants me off Pred asap. No point in that whatsoever as a flare will ensue and I'm petrified of GCA turning up again as it did a few months ago. I'm currently only tapering by 0.5mg every month. I'm one of the lucky ones and not in pain, but being aware of the GCA symptoms is more important to me. I'd never heard of either of these diseases but pretty sure that STRESS plays a huge part in us getting it.

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I 100% agree that stress plays a big factor also.

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@sirmac

How did your P.M.R. start? My P.M.R. started when my Doctor advised me to stop Arthrotec for arthritus with in 36hr my neck became very
Stiff shoulders became very sore, my hands and feet became very swollen, i could not grip even a coffee cup . I could not wear shoes or slipper on my feet they where very swollen.

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Out of the blue really. Woke up one morning and couldn't get out of bed, the pain was unbearable. Neck, shoulders, arms, hips, knees and even buttocks. Sadly, my GP didn't diagnose PMR and was treating me for Osteoarthritis. So I ended up going privately. That was in Dec 2019. By Mar 2020 GCA kicked in too. I've been slowly tapering ever since with a bit of yoyoing along the way. I'm currently down to 5mg and so far so good. I can't make up my mind whether to continue staying on 5mg for the whole of June too or to venture to 4.5mg.

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@colleenyoung

Welcome @sirmac. The exact cause of polymyalgia rheumatica is unknown, but a combination of genetic and environmental factors is thought to be responsible. Conditions without a cause are frustrating.

@ctjpmarie asked the same question about how PMR started for members, so I moved your question to this existing discussion:
- How did your PMR begin? https://connect.mayoclinic.org/discussion/how-did-your-pmr-begin/

I did this so you can read the "start" storied of fellow PMR members and connect with them easily.

What treatment is your doctor suggesting?

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He started me on prednisone 3 .5 tablets once a day for 2 weeks then 2 1/2 for 2 weeks then 2 for 4 weeks then 1 1/2 for 2 weeks then 1 for 4 weeks then 1/2 no time limit. I would get head aches, sore neck, shoulders sore back sore hips, the pain would make me nauseous . My doctor changed my medication to 1/2 .5 milligrams tablet to 1 .5 milligram tablet for 4 to 5 days the back to 1/2 .5 tablet

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@don57

My Primary wanted me to stop taking my statin for 2-3 weeks, to verify that the statin wasn't causing the pain, knowing PMR was a possibility. I had already been experiencing the pain for a few weeks, and adding another three weeks was really tough! After three weeks, he was tired of receiving my tearful emails about the pain and lack of sleep. Did anyone's doctor, take this step, before diagnosing with PMR?

Also, he thought I would become diabetic, so I started testing my glucose daily. I've been on prednisone for four months now, and my glucose levels are normal. I'm down to 14 mg's per day now. He's surprised. Did anyone have their glucose levels go up while on prednisone?

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Hi. About glucose levels: mine definitely went into the high range after just two weeks on prednisone. I tapered from 30mg. to 25mg a couple of days ago and maybe that will help. Being in the “pre diabetic” range (134 blood glucose level) has made me very thirsty and caused some weight loss (not good). I am seeing my Dr. this Tuesday and hopefully will get some answers on how to proceed. I am also not eating anything that would add to this increase in blood glucose level. It’s great that your levels are in the normal range. One less side effect for you to concern yourself with on this long journey. Maybe mine will go down as I taper, here’s hoping.

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I notice a theme that resonates with my onset experience, and that is injection. In the year before my onset, 2018, I experienced a botched flu shot injection on my right arm. The guy was chatting his head off, standing above me at the wrong angle, too big a needle... nightmare, basically, and he should have been fired. He wasn't, and I just suffered. I spent nearly a year going through unbearable pain in that arm, then a frozen shoulder, doctors telling me I am nuts, that it was a flu shot reaction (I never have had a reaction to a shot in my life), and that I need to just suck it up. Finally went to my orthopedic doctor, who took me seriously because he had actually had the same experience. MRI showed damage. A year later is when the PMR symptoms started in, and my left arm was hurting, and I attributed it to overuse from the injured right arm. I went back to the same doc, and he said, no, you likely have PMR. I cannot prove it, may just be coincidental bad luck, but I strongly suspect the PMR was induced by the botched injection.

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For three years I had been very stiff getting out of a car. I was also weaker in my legs during these three years. However, I really didn’t have any pain at all. I believed it was from permanent afib as did my heart doctor. Then in early December of 2022, I was working a job which called for being outside n 30 degrees for around 8 hours. It was nothing I hadn’t done before but this time I paid a big price. The pain that came on was everywhere and the burning and stiffness was beyond. The eight hours sitting in the cold triggered me into the worst pain I have ever known.

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@ctjpmarie

Wow, the stories of what people go through or just something else.

For everyone on here I am so deeply sorry for all of your discomfort and pain.

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I cant take predisone bad side effects for me now no one will help me just send me here and there what can I do I take ibuprofen and tramadol to take edge of any help would be so appreciated ☹

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@lizward46

Hi. About glucose levels: mine definitely went into the high range after just two weeks on prednisone. I tapered from 30mg. to 25mg a couple of days ago and maybe that will help. Being in the “pre diabetic” range (134 blood glucose level) has made me very thirsty and caused some weight loss (not good). I am seeing my Dr. this Tuesday and hopefully will get some answers on how to proceed. I am also not eating anything that would add to this increase in blood glucose level. It’s great that your levels are in the normal range. One less side effect for you to concern yourself with on this long journey. Maybe mine will go down as I taper, here’s hoping.

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Wanted to get back to you after my most recent Dr. Visit re glucose levels (mine 134). She was not concerned as they were not in the dangerous level (over 200). I am also watching what I eat so as not to contribute to increased levels. I am beginning to taper my daily prednisone dosage and she said the blood glucose levels would go down as a result. I will be at 20 mg for the next two weeks and will get bloodwork done in 10 days. I hope to report that blood glucose levels will have then stabilized in the normal range.

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I had Covid (a moderate case of Alpha) in Nov 2020, and the migrating, "roving", myalgias began with the onset of Covid. I got over covid after 2 weeks, but the myalgias never disappeared. Then April 2021 I woke up and couldn't get out of bed or walk. The pain was excruciating and the stiffness unbelievable. I was a healthy, fit, trim 52 yr old woman and in one day crippled and functioning like a 99 yr old. A month later it was suspected that I had PMR. I am way too young and healthy to have expected this diagnosis. On an interesting note, my MIL got Covid in Dec 2019 before we knew what it was, and 2 months later woke up one day screaming in bed, after numerous doctor appts was finally diagnosed with PMR. What's with Covid and the Covid mRna that has triggered this disease?? Are the doctors even asking this question?

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@pointer134

(Male, 68 y) PMR started one and half year ago very suddenly, was healthy till then. Two days of high fever (42 !!) Pain and stiffness neck, shoulders and hips. RF 140. CRP 45. Anti CCP neg. Got Prednisone, wich worked after a few days. One year later at 10 mg Prednisone and Metotrexate 15 mg, as an steroid sparing. I am not able to taper Prednisone less then 10 mg. So i will start biologic (injections) treatment with Kevzara (Sarilumab) which is allowed by FDA for PMR.
I am interested to connect to patients whom are treated with Kevzara (Sarilumab).

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how are the Kevzara treatments going? My Rheum wants me to start since Methotrexate isn't ok for me to take due to warnings of seizures. I would love to hear how the Kevzara does for you?

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