Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Has Anyone with PMR, learned/talked about a bad gut bacteria causing these conditions. I’m at my wits end with my condition. Been diagnosed 1 1/2 years and tired of taking Prednisone and Methyl trexate. At 60 years old, I feel 40 years older.

I feel your pain tinman. My diagnosis was about 18-20 months ago too. I don’t know about gut bacteria and PMR, but just generally feel that healthy gut bacteria is vitally important. Try to eat high fibers foods, prebiotic and probiotics as well as fermented foods, kimchi, pickles ( fermented), kombucha and so many others.
I never went the methotrexate route… I’m down to 5 Mg of Prednisone and hoping I can very slowly get off. But I’m going super slow after my initial tapering resulted in GCA… no fun. Hope you can find more gut info to share with us. I’ll keep my eyes peeled.

Hello @floridabonnie and @mopo I was incredibly sore, stiff, and tired all day long before being diagnosed with PMR and GCA. Both disorders can cause anemia which causes fatigue. I could manage a long walk every morning, which was a chore to get through, but that was it. I could not keep regular strength training workouts up. Now tapered down from 40 mg Prednisone to 7.5 mg, most of my pain is gone. I never felt old before the onset of these disorders (I'm 70), even after open-heart surgery, but now I have had to face aging in a new way, accepting myself as a somewhat "frail, elderly" person, with the additional diagnosis of osteoporosis. On the lower dosages of prednisone, under 20 mg, I sleep fine. When I was "wired" on 40 - 20 mg, lemon balm herbal tea helped me get some sleep. I would drink it while reading on the couch, not in bed, then feel drowsy after an hour or so, go back to bed, and sleep a little more. DO NOT take melatonin as it messes with the immune system and every bottle of melatonin I've seen has a warning on it about that. PMR and GCA are autoimmune disorders and are considered "self-limiting" diseases. They eventually fizzle out. Eventually??? Also, to manage pain while on Prednisone, acetaminophen is recommended over NSAIDs, which can cause additional stomach irritation. Before diagnosis, I invested in an infrared heat pad called Thermotex, which provides the deepest heat possible. It is very comforting. All the best.

@tsc Did you not experience no pain until you reached 7mg or on your way down from 20? I’m wondering as I decrease the mgs if all of a sudden the discomfort goes away. Thanks!!

Hello @mopo, from what I've read about PMR and the proper dosage of prednisone, recovery is supposed to be "miraculous". I was on 10 mg of Prednisone first. The Rheumatologist asked me if my pain was gone and I replied about 60%. He said it should be all gone, increased the dosage to 40 mg, and then ordered a biopsy of my temporal artery, which was positive for Giant Cell Arteritis. On 40 mg of prednisone, the relief from pain was immediate. Since tapering down from 40 mg, I have had the occasional ache, but nothing like what I experienced previously. I hope that helps!

Were you having any of the classic symptoms of GCA like headache, jaw pain, top of head pain, vision issues? Is that why you had a temporal artery biopsy. Curious about this....what "pain" caused the Rheumatologist to up your steroids...or is it that th biopsy was what the pain prompted then the positive biopsy triggered the increase in steroid? Thanks for your story. Sharbuffalo

Hi @microbe1943 after the horrible pain and stiffness from my neck down to my feet, due to PMR, went away, I had a tender scalp, a very itchy torso, severe neck pain that started on both sides of my head and extended down into the neck (I had to turn my body to look around), and short stabbing pains on one side of my head, from my ear to the nose. They were short and fast, but the day before the Rheumatologist asked me about pain, I counted 25. I also had a dry, nonproductive cough in the evenings. I had trouble seeing out of my right eye a couple of times (everything was white), and I had about 26 gagging attacks over a seven-month period, which I've never read about as a symptom of PMR or GCA. Also, loss of appetite, anemia, and general malaise. I got a mild case of shingles prior to the diagnosis, despite having the Shingrex vaccine approximately a year earlier. My mother-in-law had GCA 30 years ago and her symptoms were different, a headache, malaise, night sweats, and jaw claudication. She had difficulty chewing. The medical texts I've read advise physicians to increase the prednisone if GCA is suspected, even before a definite diagnosis by biopsy because the consequences of GCA can be so severe. When the doctor suspected GCA, he upped my steroids - this was a couple of days before the biopsy. Once my elevated inflammation markers were identified, I was lucky to have the biopsy done and the diagnosis of GCA in a week. Thanks for asking!

Hi, @mopo I forgot to say that my doctor told me that if the pain increased when I tapered prednisone, I should go back up to the prior dosage for a couple of weeks, then try the taper again.

Wow, thank you for your input. I did not know that I should not take melatonin to help me sleep. I have tried 5 mg of melatonin with a 1/4 of a CBD gummy. I slept like a baby. But I will not take the melatonin anymore. I went from December thru April in pain most of the time, before I was diagnosed. Then one day my primary doctor finally took a good look at me and said, "I know what it is, you have PMR' She sent me for bloodwork, and got me in to see a Rheumatologist within 2 days. He called in a prescription of prednisone for me and the second day after taking the prednisone, I was out mowing my lawn! I felt so much better. Before the Prednisone, I couldn't even get out of my chair without help.

Hi, I’m Amy. Last month diagnosed with PMR after 5 years of struggling to find out what was wrong with me. A rheumatologist told me 5 years ago all my blood tests were normal so I gave up until my daughter was diagnososed with lupus in August. We both also have vitiligo and I have Hashimoto’s thyroiditis. I am 69 years old but felt like 90. One week of 10 mg prednisone has made a tremendous difference in my pain level. Glad to find this forum.