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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
Replies to "Hi @gemmax, my first occurrence of PMR was back in 2007. A Mayo rheumatologist diagnosed my..."
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Hello, I am writing to you, John, because you are a leader 🙂 I was diagnosed a couple of months ago with PMR, eventually I found this forum and have been very interested in the postings. They have given me a lot of information. At first I was misdiagnosed and given antibiotics which simply got rid of the good bugs in my system. Also I had shingles, with delay diagnosis, because I thought I had been bitten by a bug or spider. (I am outdoors a lot in wooded areas) My doctor started me on 3 days of 40mg. of prednisone, then to continue with 20mg. After 10 days of this, I lowered myself to 5mg as I had dizzy spells, fatigue. After 10 days of 5, I lowered it to 2.5mg. Starting to=day I am going to try to not take any and see what happens. I am doing this because I am trying to protect eyes and heart. This is my background - on the 17th January I will turn 91. Almost 4 yrs ago I had double by-pass surgery. My heart attack was a surprise to all, including my general physician. Until that time I played tennis, pickle ball and did Zumba. Until the mid 70s I was an active runner, mostly 10K and half marathons.
One of the things I am concentrating on now is diet. My normal diet is mainly vegetarian. I've continued this, but even watched it more carefully. Practically no processed food, especially sugar, organic vegetables and fruits, nuts, yogurt. I can really tell the difference when I eat "correctly" and when I slip - less pain and more energy. I am trying to be realistic. I do not expect to be free of pain as it is part of life, but to have pain at a manageable level for quality of life. It is encouraging to read about people who have flair ups, but manage to get back to lower doses.
Maggie T