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How did your PMR begin?

Polymyalgia Rheumatica (PMR) | Last Active: Jun 18, 2023 | Replies (114)

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@stiff

Today is the 5th anniversary of my PMR journey. I recall there was an ice storm in Michigan 4/14/18 (yes, that happens in Michigan mid-April sometimes!) I went for a slippery walk outside, admiring the icicles and frozen branches. Next day I noticed some soreness which I attributed to the weather, exertion, etc. At that time I was an active, fit but somewhat overweight 56 year old nurse-midwife, accustomed to working long hours. Each day over the next week or so the burning pain/stiffness in my hips, back of thighs, buttocks, and shoulders got worse, to the point where I could barely get out of bed to dress myself. I felt as though I'd aged 30 years in 2 weeks! I had no idea what was happening, nor did my primary healthcare provider. I got labs drawn which resulted in a fairly prompt referral to Rheumatology. Based on symptoms/presentation and elevated CRP, I was diagnosed with PMR and started prednisone 12.5 mg, which started helping within 1 day. I'm not sure what was the trigger; I'd had a viral respiratory illness that winter (long before COVID). Genetics is definitely a factor: my maternal grandmother had PMR and Giant Cell arteritis in her 70's and my mother has PMR in her 80's. I have tried to taper down on prednisone but have had several flares or relapses over the years, and have never gotten below 2.5 mg prednisone daily. I tried Plaquenil in addition to the prednisone, but it did not seem to help much and I had side effects such as dizziness. I struggle with Prednisone side effects, some weight gain, elevated blood sugar, sleep issues, fatigue/brain fog, vertigo and others. I cut back my hours at work, hoping the disease would "run its course" as it usually does. Unfortunately that hasn't happened (yet) so I eventually had to stop working. I have tried stress reduction and diet modification (although I already had a fairly healthy Mediterranean-type diet). I exercise in a warm water therapy pool/swimming laps, which is very helpful. Some days are worse that others. I have some "good time" in the afternoons but mornings are still very challenging. My Rheumatologist may start me on Methotrexate (but I have been reluctant due to potential side effects and my mother's bad reaction to that medication). I have never had COVID and was fully vaccinated/boosted. As a health care provider, I was extremely cautious with masking and other precautions. My PMR flares or relapses may be related to stress or overdoing activities. Often there is no discernible cause. While I consider myself lucky to have a treatable condition, PMR has definitely changed my life in difficult ways.

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Replies to "Today is the 5th anniversary of my PMR journey. I recall there was an ice storm..."

Looking back, my first bout of PMR started after both a stressful experience and physical exertion. The stress related to my closest friend dying of breast cancer. I was helping her both through treatments and hospice. About a month or 2 later, I did a 5-mile run/walk much faster than usual and symptoms appeared the next getting worse and worse until I could hardly move. This was when I was 57. I had a 12-year remission after 2 years of prednisone. I am now 76 and on my 3rd bout. The last started about 2 weeks after a cortisone shot in my knee (thoughI think it was underlying when I had it). I am now 3 years into this bout, decreasing prednisone from 2 to 1 1/2 mg.