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

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.

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.

Wow, @floridabonnie, it sounds like you have a good Primary Care doctor! My PCP didn't diagnose PMR after I had symptoms for four months even though my inflammation rates were slightly elevated. I went undiagnosed for nine more months - until a friend, an infectious disease specialist, took an interest and started reviewing my lab work and symptoms. Then I had to really push my PCP to order the proper lab work. I'm fortunate it worked out in the end and the GCA didn't do any damage prior to diagnosis. I know that terrible feeling, the combination of pain and weakness that makes it impossible to move. Getting out of bed was a real challenge, and going to the bathroom, too. I bought a bidet toilet seat cover so I wouldn't have to use my hand and arm so much to attend to my personal hygiene. I broke down and bought an electric can opener too! Stay positive, Teri.

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.

Hello Amy @mzaml, Welcome to Connect. I'm happy to hear that you finally were diagnosed with PMR and the prednisone gave you relief from the pain symptoms. I can't imagine going 5 years without any relief from the pain of PMR. I did find some information about a PMR diagnosis when the blood tests are normal which I guess is one of the reasons PMR can sometimes be hard to diagnose.

Polymyalgia Rheumatica (PMR) with Normal Values of Both Erythrocyte Sedimentation Rate (ESR) and C-Reactive Protein (CRP) Concentration at the Time of Diagnosis in a Centenarian Man: A Case Report: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313638/

Here are a couple of other discussions you may want to read through and learn what others have shared:
-- Vitiligo: https://connect.mayoclinic.org/discussion/vitiligo-2/
-- Sjogren's, Hashimoto's and Thyroid Dysfunction: Got questions: https://connect.mayoclinic.org/discussion/sjogrenshashimoto/

Do you mind sharing any questions you were looking to get answered when you found Connect?

The first part of April 2021 I found that I was unable to walk after sitting. My GP put me on 10mg of prednisone and after a couple of days everything was fine except for my “numbers” My C protein was 10 than went to 14. Prednisone was increased and I started to get tenderness in the temple area. Was put on 40mg prednisone and had biopsy of both arteries. The test was negative. Along with the temple pain I have horrible pain in the back of the head and upper back. I am now going to a rheumatologist It’s the back of my head that really alarms me. I can’t get any relief. I don’t hear anyone talk about that.

Hello @carol75, Welcome to Connect. I have PMR which is currently in remission but when it was active my primary care doctor along with my rheumatologist would frequently ask me if I had any pain in my scalp or temple areas which can be an indication of giant cell arteritis (GCA). I also lived with some pain as I was tapering off of prednisone for both occurrences I had with PMR. My rheumatologist had me keep a daily pain log along with the prednisone dosage I was taking for that day which was helpful when I was tapering off of prednisone. Here's some information on GCA that might explain it a little better.

Giant Cell Arteritis – Fast Facts: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Giant-Cell-Arteritis

You also may want to read through the posts in these discussion to see what other members have shared:
— PMR initial diagnosis: Can there be an underlying disease?: https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/
— GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica): https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/

It's good that you have an appointment scheduled with a rheumatologist. The tenderness in the temple area is a sign of Giant Cell Arteritis and much more serious that PMR. How soon is your appointment? Can you share an update with us after the appointment with the rheumatologist?