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.

@kberlyhouse

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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I don’t use it

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@1yoganurse

I had no stressors when my began. I was healthy.. went to sleep and awoke at 3 AM with my shoulders and hips on fire in severe pain.

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I had no stressors at the onset, but I had high stressors in my career for several years prior to my onset. (I’m 78) My symptoms started with shoulder pain only. I was walking 5-6 miles a day late summer 2022. I couldn’t understand why my shoulders were aching after I finished walking—I’d been using my legs and feet not arms! Then the cold weather set in and the shoulder pain went away—I was riding my recumbent bike indoors. Then about 90 days later, my hip and leg muscles became stiff and painful and the shoulder pain returned along with fatigue, weight loss, appetite loss, a low grade fever, night sweats and extreme pain. I’m a healthy body weight and eat a healthy diet. I’m on a ‘step down’ regimen of prednisone, but it’s a delicate balance in not exercising too much. In reading comments today I see I need to drink much more water, which won’t be an issue. I’m on 5 mg now and am looking forward to ‘stepping down’ to 1 mg and putting this behind me.

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My experience has been to find a balance with exercise because too much is no good as is too little. Listen to your body.
At 78 PMR is self limiting. It will gradually fade away (often 1-2 years). Stay with your doctor and his orders. Every time I reduced my dose, I had a flare up and had to go on a higher dose. Be patient.
Namaste 🙏❤️

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I had multiple triggers, extreme stress in the years leading up to dx due to helping a now adult child thru serious health issue requiring extensive travel, overseeing my business serving people with disabilities 24/7 thru covid with extreme staffing shortages, helping my husband thru triple by-pass and a heart valve replacement in the middle of covid, a couple injuries to my hands, wrists and arms, one due to being pulled forward and sliding forward on the sidewalk as if going into home plate (when walking my dog), another when my spouse backed his body into my outstretched arm while sleeping causing extreme pain and then having to deal with my daughter’s boyfriend who required a restraining order. While just dx in April, i had aches and pains going back a while so started taking ibuprophin occasionally then tried an otc supplement that was designed to boost hgh as thought that might help me. Started that in Nov 2022. In Jan 2023 my arms swelled up and could not lift them. I stopped the supplement and that got better. Then went on a trip to coast for some r & r. I decided to use more ibuprophin while there as i thought I needed so I could enjoy myself. When I did, that is when the pmr hit me hard. We came home early. While I had flown five days earlier with no problems, the return flight was horrid. I could not get up and when i finally did, walking was bad. My spouse suggested a wheelchair but I declined, painfully, slowly hobbling through the airport. When home, discovered my legs were swollen to twice the size. Those are the highliights of my stressors. I call it “when the chickens come home to roost.” Good news is I am responding well to prednisone and my complimentary treatments so far.

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I also told people, “my body is really mad at me.”

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@kberlyhouse

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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Hi @kberlyhouse, My understanding is that something triggers the immune system to go into overdrive and start attacking the body. My PMR followed a foot injury. My aunt's, a back injury. My guess is that COVID probably triggered your and your mother-in-law's immune systems to go into overdrive.

PMR and GCA are common in people 50 and over, more common as people get older, and more common in men than women. There are also some genetic markers and the highest rates of it are in Scandanavian countries.

My ancestry is primarily Southern European/Mediterranean, but who knows what my ancestors were up to years ago? My aunt, my mother-in-law and I all developed Giant Cell Arteritis as well.

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@sirmac

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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That seems a very low starting dose for PMR. The usual dose would be 15mg for at least two weeks, if not longer. Then tapering by no more than 1mg every four weeks. I preferred my tapers to be 0.5mg. If you're in pain I'm not surprised.

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@sirmac

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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Hi @sirmac, I'm still not sure how much prednisone you started taking when diagnosed with PMR. You said - "He started me on prednisone 3 .5 tablets once a day for 2 weeks..."

Does this mean you started a treatment with three 5 mg tablets (15 mg) or does it mean you started with three .5 mg tablets (1.5 mg)? I was started at 20 mg prednisone for both occurrences of PMR by my rheumatologist. I think the average starting dose is 15 to 20 mg but tapering off and managing the symptoms can be difficult which is why tapering slowly is helpful. Have you changed your diet any to try an eliminate inflammatory foods?

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Having worked in Construction since 15yrs old and spent doing it for the next 53 yrs very physical demanding job there for I experienced a lot of pain Then last October I started to get a pain in my legs groin upper body I put it down to wear tear then by December 22 got to a stage where something had to be done asap lady luck was shining on me I had been getting treated by the multiskeletal department for a torn tendon in my shoulder had a cortisone injection for I spoke to the lady about the excruciating pain I was getting on December 29 my daughter had to drive me to see her and as luck goes she had come across pmr before she knew straight away what it was she put me on 40m Presidolone a day for 1 week it was like a miracle pain all gone but mistake they made after the 1 week nobody told me what to do then a few days later because I had no steroids left the pain came back with a vengeance I went straight to my doctors I should never have stopped taking the pills put me straight back on them and started to work on me again I wouldn't wish the pain on my worst enemy fast forward to today still having problems I was down to 8m a day then put me back up to 10m then start to come down again 1m a month everyone on this site have been very encouring and because they understand the pain side it's great to be able to relate to people who understand what it's about the good thing now is I'm waiting to see a neurologist and hopefully get back on track but I would just like to say a big thank you to everyone who got in touch with me since I joined this forum last Tuesday looking for help and guidance 🙋‍♂️👍

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Symptoms of PMR started 24 hrs after receiving my third Covid (Phizer) booster. Severe arm, neck, shoulder pain came out of nowhere. Completely immobilized me and had to simply sit in a chair and not move. I’m a healthy 67 year old man who does daily yard work, walking 5 miles a day. Trying to describe what was happening to me was difficult. Remember saying that I felt like something had possessed my body.

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