I'm hoping that I can use this as a way of finding other people with this same diagnosis. I found out that I have polymyositis only last week, and I am still in the process of researching the whole thing. Can you tell me how polymyositis has progressed for you? How is your quality of life?
My husband was diagnosised with polymyositis yesterday. He has been on predisone for 3 weeks and is improving.
I was diagnosed with polymyositis in 2010 after many tests. It started as pain in my rt hand and progressed to loss of ability to do simple things, such as wringing out a bath cloth to reaching up in the cabinet to get a glass. The main thing associated with this is pain. I was given hydrocodone and later vicodin. The key to getting better was prednisone. 40 mg for the first month and tapering off at the rate of 5mg per week. I was supplied with a walker, a high lift potty chair that fits over a regular comode, a hospital bed and leg lifter and bath chair. I had several weeks of occupational and physical therapy while in the hospital (33 inpatient days). I find that the walker kept me mobile.
I AM VERY INTERESTED IN HEARING HOW THIS DISEASE IS AFTER 3 YEARS OF YOUR DIAGNOSIS. MY HUSBAND WAS JUST DIAGNOSED WITH IT ABOUT 6 MONTHS AGO.
THANKYOU
CAROLE
I was diagosed 28 years ago and have been on stroids every since. For the last 2 years the doctors have been trying to get me off of them. My adrenl gland just will not kick back in. Prednisone would not work for me. Medrol is the steroid I take. I also am on methotrexate. that drug has cause me to have Macrositic anemia. What ever side affects steroids can cause I have had them. I was able to teach for 26 years. My worse problem has been my bones breaking. I now take Forteo injections.
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My brother was diagnosed with Polymyositis about 5 years back. He goes up and down, but constantly has blood drawn to check on his condition, and it is prednisone that gets him back on tract. He takes it for a short time and then get taking off a little at a time. He feels good, but does tire out and has to go take a nap. But most of the time he quit active, doing yard work on two three houses. He walks with his wife on the levy and stays in shape. He said he feels fine, and his attitude is very positive that he going to beat this thing. I find he doing well after being diagnosed five years back.
I'm glad he is improving but i was put on prednisone in the beginning and it has alot of side effects which i had all of them. so just be aware of that.
My husband was diagnosed approximately eight years ago.
His abilities are very limited at this stage. Due to swallowing issues from muscle loss he has become malnourished. All muscles in his arms, chest, backside, legs are down to nothing. The old saying down to skin and bone is very true. Polymyositis has taken everything out of him. He was very active person before this diagnosis. Thankfully, he has never had pain as some do.
I wish there were better things I could encourage you with, but he is at the end of the progression of the disease. It destroyed all muscle in the body, heart lungs from our experience is the last to be effected.
Nothing pretty about this disease, he's had cancer twice and has come through, but this he cannot not lick!
I wish there were better things to come for your husband. Enjoy the time you have while he can still be somewhat active. The fatigue is very debilitating .
His abilities are very limited at this stage. Due to swallowing issues from muscle loss he has become malnourished. All muscles in his arms, chest, backside, legs are down to nothing. The old saying down to skin and bone is very true. Polymyositis has taken everything out of him. He was very active person before this diagnosis. Thankfully, he has never had pain as some do.
I wish there were better things I could encourage you with, but he is at the end of the progression of the disease. It destroyed all muscle in the body, heart lungs from our experience is the last to be effected.
Nothing pretty about this disease, he's had cancer twice and has come through, but this he cannot not lick!
I wish there were better things to come for your husband. Enjoy the time you have while he can still be somewhat active. The fatigue is very debilitating .