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@olegraymare mare I was diagnosed with this illness for a long time, but thy did nothing to treat it. I stopped taking prednisoneon a regular basis years ago after it gave me diabetes. I will take a short course of 5 days, but only if there is no choice. They just basically ignore the PMR. I don't thnk that they know what to do.except to treat the pain. My reg doc is the best doc I have ever had. I appreciate so much sll that he tries to do for me.My wish is that everyone good find someone like him. If I do not treat the pain in my muscles every day, I cannot walk very far and cannot stand for more than a few minutes. if I treat it I do okay taking short easy walks and functioning around home and doing some minimal gardening. I have bad shoulder problems so have to have help.Please tell me more about the PMR. It was never clearly explained to me. I’m so glad that you are posting. thank you.
Replies to "@olegraymare mare I was diagnosed with this illness for a long time, but thy did nothing..."
Hi @gemmax, my first occurrence of PMR was back in 2007. A Mayo rheumatologist diagnosed my PMR and explained it to me that polymyalgia rheumatica (PMR) was basically arthritis all over the body in laymans terms. He also explained each of us is different. The way he explained it to me when he prescribed a starting dosage of 20 mg prednisone to treat it is the goal is to get the inflammation under control then once it's under control start decreasing or tapering the dosage of prednisone until you are able to get off of it with little or no pain or stiffness. My first occurrence took 3 years to taper off of prednisone and the last 6 months or so was going back and forth between 1 mg and 1/2 mg dosage. My PMR was in remission for 6 years and came back in 2016.
The second occurrence only lasted about a year and a half. I was able to taper off this past February. The difference in the two occurrences for me seemed to be better control of my diet and more exercise. Both of these were a lifestyle change due to other health problems -- small fiber peripheral neuropathy (SFPN). I found a book The Wahls Protocol by Dr. Terry Wahls that made me think more of what I'm putting into my body...either feeding the illness or helping reduce the symptoms (my words). I can tell you that my symptoms seem pretty much what you describe -- I can't walk very far, can't stand or sit very long and it is worse if I don't force myself to do some exercise. I don't do a lot. I ride my recumbent exercise bike for 30 minutes 4 or 5 mornings a week when I first get up. This helps me move OK the rest of the day. I still have to be careful standing up and taking those first few steps which is worse the longer I sit.
Mayo Clinic does have some information on PMR here:
-- https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545
Arthritis.Org also has some good information on PMR here:
-- https://www.arthritis.org/about-arthritis/types/polymyalgia-rheumatica/
Exercise is important but the key IMHO is to not over do it.
@gemmax it sounds like you have found a routine that minimizes and helps with your PMR. Have you tried any other treatments?
Hoping for a pain free day for my PMR friends.
John
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Hi my name is Roland & I have PMR I have had it for 15 months. I know you are frustrated about not being to get rid of your PMR. Now I don't know what your Dr. told you but there is no cure for PMR just pain treatment & try to work out every day. This is an autoimmune disease & it is suppose to go away by itself they say 1 to 3 years & maybe even a reoccurrence. I started with 20 mg/day of prednisone & am now stuck on 5 mg/day. My pain went away but right now it is in all my finger joints a little uncomfortable but it doesn't stop me from doing anything that I wish to do. Now with prednisone there are possible side effects & of course with all medications one takes. You have to start on a dose which controls your pain & very slowly decrease the dosage. You see with steroids taking an oral dose your body is tricked on not making it so you just cannot stop taking it all at once you have to wean yourself off the stuff. John Bishop is a good mentor on the PMR not a Dr. but a person that has had it so he is very knowledgeable on that subject. Don't give up your pain is treatable & along with plenty of exercise every day you should be okay.