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

Ibuprofen doesn't help. I doubt you'll find much information on people who have PMR and don't take prednisone. None of us want to take it, but it's the only way to have any quality of life. According to Mayo, the average duration of PMR is 5.9 years. If you have PMR, it will continue to get worse and worse as the inflammation continues to build up. I remember reading something on the HealthUnlocked PMR board that suggested even under-treating PMR may lead to serious consequences including Giant Cell Arteritis. I'll try to see if I can find more information on that.

After 3 years of prednisone, which worse than PMR, IMHO, I chose the grin&bear it path. For me PMR has ups and downs, comes and goes. Sometimes aspirin works, try stuff.

Hi @ronbode - about 30% of people with PMR develop Giant Cell Arteritis. If untreated, it can cause strokes or blindness. If you get strange pains in your head and neck, and especially trouble with your vision, don't hesitate to go to an emergency room. For me, the incapictating pain of PMR and subsequent diagnosis of GCA made treatment with prednisone a necessity. A good rheumatologist will try to find the right balance to manage your symptoms with the lowest amount of prednisone possible. Good luck!

Thanks for replying & yes, I inquired with Mayo years ago but they turned me down, no reason. I just resubmitted & am waiting to hear again. I tried a “team” at Ochsner in NOLA. They work more like a machine linked to a bank. Not giving up tho!

I am still dealing with trial meds the latest being hydroxychloraquine, it seems that nothing besides prednisone or mthylprednisolone at a level of at least 8 to 10 mgs a day works. they tried with methotrexate, leflunimide and now this. the pain when i reduce the steroids is so bad its insane. the insomnia that goes along with it is not helping either. am taking 8mg methyprednisolone with 400mg hydroxychloraquine but it seems i was doing better on just the methylprednisolone. i dont know what to think.

Since you seem to have been jumping thru hoops already, I took all of the above as well, the glitch is systemic inflammation attacks with a mind of its own. It was why I researched intestinal parasites. With the help of holistic massage therapists, it irraticated a good percent of the “bugs”. This helped immensely with mild IBS and so many other symptoms. Mental stability is a large slice of the pie. Meditation, yoga, mindfullnes, anything to get out of your own way. Good luck

I too am having struggles. I was almost an invalid by the time I was diagnosed. Started on 40 mg of prednisone. Tapered down to 8 over 5 months then a flare up at 8 always was sore from mid night to about 11:00 take my meds at 5:00 am. After the flare up I saw 2 dr who I respect and have confidence in. They suggested go back to 10 which I did, but no better lots of stiffness and pain so went to 12 and still too much soreness and pain to try to taper again as mentor John says pain level should be 1 - 2, I am at 4 - 5 now I really don’t want to go to 14 but I may have to. My dr said try taper at 1/2 mg every two weeks now. Everyone is different and we all struggle trying to get over the pmr and off prednisone. Hang in their folks know you are not alone

some days are better than others for sure, if my supply of medrol gets low i get a little panicky, i feel addicted and want to stop but the insane pain prevents that. i have never liked taking meds, i even try to manage my diabetes with natural methods like white mulberry tea but the medrol makes my sugar spike so having to take glipizide as well. I really hope and pray that one day some doctor finds a cure for this condition but for now i find some peace venting to others who understand, thank you

This group has helped me just that I'm not alone. My PMR started in spring of 2018 starting prednisone at 20mg. Was able to taper down to 2mg summer of 2019 but just when COVID hit us in Jan that year I had a spike that was so bad I went back up to 15mg. I have been struggling ever since and have been stuck at 10 1/2 now for 4 months. I'm thinking I should get tested for GCS. The pain is mostly in my neck, so bad! I do get weird headache but they come and go and not severe. No eye trouble. I just don't know what to do and my Rheumatologist is also stumped. I'm getting a second opinion Dec. 11 2022.

URGENT ADVICE NEEDED
Blessings all. My mother is 80 and horrendously suffering from PMR & osteo arthritis. After 4 months of prednisone treatment which alleviated all pain, her doctor dicountinued it due to the negative health effects. She is now on Plaquenil, which is doing nothing. The pain is so severe that she doesn't want to live anymore. I'm researching accupuncture and infrared treatment and wondering if anyone else has had success with alternative medicine/treatment OR a less harmful drug.