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Successfully treated for Polymyalgia Rheumatica
Polymyalgia Rheumatica (PMR) | Last Active: Nov 9, 2023 | Replies (101)Comment receiving replies
Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about prednisone. It is the magic bullet for polymyalgia rheumatica (PMR). My first diagnosis of PMR was in 2007 and I was put on 20 mg of prednisone. Within hours of taking the first tablet the pain was pretty much gone. It took me three years to taper off of prednisone. The last six months was going back and forth between 1 mg and 1/2 mg dosage until I was finally able to get off in 2010. The PMR reared it's ugly head again in March 2016 and I was back on 20 mgs of prednisone. I'm now at 5 mgs and trying to taper down by 1 mg a month but will have to see how it goes. It does have it's side affects but I think staying active like you do helps. I ride a recumbent exercise bike 4 to 5 mornings a week for 30 minutes but have trouble doing much else due to my peripheral neuropathy and the numbness in my feet.
Wishing you luck on tapering off the prednisone and hoping your PMR goes into remission.
John
Replies to "Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about..."
John, I agree that the communication needs to be better between my doctor and myself. However I have had the RA for some time and it was not treated. But once I saw a Rheumatologist, Things started moving in the right direction. My problem is mornings. I am in SO much pain and sick all over. I take my shot Methotexate on Sunday. Monday, I am sick as can be. How can anything that makes me this sick be any good to me? I had to see an oncologist because a blood workup showed some activity. But after two visits, I have been told I do not need to see him for 6 months. I am seeing a Gastrologist today because my swallowing is getting bad. Since I learned more about this symptom, I am very careful to take small bites of food. I have sores in my mouth and one on my lip which will not go away. The sores are different from a Canker Sore. I am so frustrated. I see my physicians at the University Clinic. Doesn't anyone know what is wrong with me besides Rheumatoid Arthritis? At first my kids thought I was over reacting to say I did not feel well all the time. You know, we dont bleed so it is difficult to see our pain. I also take Vit D and Folic Acid . Any ideas about where I am headed? This morning the pain was so bad I wanted to quit all drugs and die. That is not an option. I am only 75 and I want to live another 10 years and see my grandchildren marry.
Hello @oregongirl, I know you are frustrated with the treatments and the doctors not being able to diagnose what's going on with your health. We are the same age and I'm with you - I'm looking for another 10+ years. You are asking a lot of good questions that I'm not the one who can answer. You are your best advocate and you have laid out a lot of your symptoms here. May I ask a question and offer a suggestion that has helped me in the past?
Do you go to your appointment prepared to discuss specific questions you have with the doctors? I like to write down a list of questions I have for the doctor along with the related symptoms I'm having so that I don't forgot to ask them in the heat of the moment. I try to write them in a bullet list format so that while I'm talking with the doctor I can read from the list and give it to him when I'm done.
John
I always have questions. I know I have RA, but I could not understand why I had to see an oncologist. Well, she had seen something on my blood workup and did not want to treat me for RA until she had answers. She started to treat me. I trust her. Its just that I am sick of being sick. I wonder how much my heart can take. My older daughter wants me to look into Independent living. I know they mean well. And, I probably would get more exercise. However....I see myself much younger than they do. I have to face reality and take a handle on my living arrangement. I sold my home and am living in my son't guest house. FORGET it... I cannot stand being that close yo my kids
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Prednisone is no cake walk tapering off but I do agree with you that it's definitely not as bad as other drugs, morphine being one of them.