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@charlena

My husband is still on prednisone, it’s been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, “….. polymylagia rheumatica, if that is what you have, . .. .” Needless to say, we weren’t happy with that statement. Another of his doctors advises that my husband’s symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband’s symptoms and when I mention to his rheumatologist he doesn’t seem interested in other possibilities. Probably time for a new doctor.

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Replies to "My husband is still on prednisone, it's been nearly 2 years. He has tried several times..."

Let me share my story. I am 58 yrs old. I have always been really active by walking, biking, hiking, etc. February 2016 I started having some stiffness. I thought maybe it was stress related. Then it became worse and I had pain in my upper arms, thighs, neck, and buttock muscles. I couldn’t get an answer from a physician. They kept trying to dose me w rheumatoid arthritis.
I was on vacation in June and I met a lady who was describing her symtoms to me. She had just been diagnosed w PMR. Her symptoms were exactly the same as mine. I went back to my Dr and told her I believed I had PMR (I understand it’s hard to diagnose). She did some blood tests, found my inflammation factors to be high and the determining factor to diagnose was, immediately when I started taking the predisone, I felt completely healed. That was on 10mg. I read up on side effects of predisone and I don’t want to take the medication, but find that I can’t move wo it. I am now on 5 mg. I still have some pain and stiffness, but it is manageable. The dr wanted to put me on methaltrexate and I refused. It has been a year now. I find that stretching, even though it is painful and going for short walks helps. Some days I feel normal, but most days it is evident I have this stiffness. (I have named it the FRANKENSTEIN DISEASE)! I still get up and work every day until noon, and I try to get a couple of hours of rest each day. I am more tired than I use to be. I have read others stories that talk about people going into remission, so I am praying for that.
Barbara Rene’

Thank you, Barbara, for sharing your story. It always helps to know what symptoms others diagnosed with polymyalgia have. My husband’s symptoms are very similar to yours. His rheumatologist has only prescribed the prednisone. He would like to be able to bee off of it for periods of time, but when he decreases the doseage he can tell a HUGE difference within hours. He works every day 8-9 hours and is on his feet 99% of the time. He rarely complains but when he does I know he is in a lot of pain.
Charlena

We have to stay in touch and share what each of us finds that helps.
My goal is to keep moving, even when it’s difficult!

I am so happy that this forum is here! It always helps to meet and talk with others whose input is so valuable.
My husband works every day, I just wish I could get him to exercise more. He almost never complains, therefore when he
does complain, I know he is in terrible pain.

Exercise is one of the keys to PMR. I hated doing it but once you get into a routine and find one that is not too difficult or that causes more pain it’s not too bad. I bought a recumbent bike, elliptical combination and use it for 30 minutes when I first get up 5 to 6 days a week and then a few times a week I use it in the evenings for 30 minutes while watching the news. It’s easy for those that have trouble or don’t like walking because it has a larger seat and pedals so doesn’t cause joint pain. I also started using a therapy band to see if I can regain some strength in my hands, arms and shoulders.

Keep working on him to exercise!

John

Thanks, John, for the great info! I use a Pilates chair which can be used for several exercises. He has used this a few times. We also have therapy bands which I will try to get him to use- great idea!

Thanks Barbara so much for sharing your story I have just read it out to my husband and he said omg that sounds exactly like you babe !! I am 57 and had just this last week been diagnosed with PMR I was extremely lucky as my doctor was switched on and started doing the blood tests etc as soon as I mentioned the symptoms I was having I am now on 10mg prednisolone and getting it under control. Thanks heaps for the information I now don’t feel so confused about it all regards Lynn from South Australia

I’ve just kept up walking 30 minutes, 2x day. No pain from that. I’m trying to ease back into pilates – where I can get muscle stiffness, but not the same pains as PMR before I started taking prednisone.

Welcome to Connect Lynn, @lynngweeney,

Thank you so much for sharing your story. May I ask what symptoms you had? Did the doctor tell you how long you have to be on Prednisone? We look forward to getting to know you.

I had pain in arms and hips. My hands had so much pain, I couldn’t hold a plastic plate. I felt like someone was braking my bones. I have been on steroids July was a year ago. Today I ‘m on prednisone 5. I at 5 and when you get to 5 they do a test to check for inflammation. I took a really bad fall so they have to wait until I am free of inflammation. I was told that when you get to 5 you have to be careful so your adrenalin doesn’t shut down your organs. I know it’s scary especially when you start. I felt great but over time not so good. It has really helped. I was told some people never ever have this problem. I’m not sure which way I will go but I’m a positive person. Having cravings for sweets are the worst. I have gained 15 pounds. My doctor said it will come off when I am finished. The wait comes to your waist up. Good luck!