The drugs I take courses me to gain weight, and I cannot run or jump without falling. As a matter of fact by me not being able to do those thing that how I notices there was a problem. I have living with this for 10 years now. And yes exercise is very important element in keeping your body from braking down. I.m on 15mg prednison it soas 20mg a year ago.
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Hi! I was diagnosed in 2005 at 52 years of age. We knew something was up for about 2 tears before the diagnosis. I am 62 now and although I still struggle with Polymyositis I have learned to live with it. The early stages of treatment were by far the worst. I have learned to avoid anything that doctors want to give me intravenously. Prednisone should be the first line of defense. Thereafter, methotrexate and immuran have worked for me. There are occasional inflamations and unfortunately I have had to go back to prednisone. It really works, but the side effects are awful; diabetes, paranoia, sleeplessness, loss of bone marrow , etc. The medicine Rituxine which is intravenous really scared me and I never took it. Remember, hospitals these days are primarily there to make a profit and prednisone won't make them a dime. They tried plasma infusion and other than being very expensive it did nothing but get me very sick. What I offer you is strictly just my own opinion. You decide what is best for you.
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I've had polymyositis for 15 years now with the occassional flare up. I started with 48mg Medrol and now on 6mg. I was first diagnosed with interstitual lung disease (anti jo 1) but recent tests showed that I no longer have it. You have to be positive, live healthily, exercise and follow your doctors orders strictly. Good luck to all.
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Hi my husband was diagnosed with polymothesis when he was 56 years old. He too was on a lot of meds. He had lung problems, trouble swallowing, problem with his heart and he had breathing problems. He was on prednisone, immuran etc. He passed away at age 61. All of his organs started failing after he was rushed to the hospital due to breathing problems and not getting enough oxygen. I pray that God will keep all of you and cure all of you. Please stay from around people who may has colds,virus, etc. your immune systems are already weaken from the polymyositis, take your meds, exercise. God bless.
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Wow... I know this is an old thread but as I read what you replied it is that same thing my mother went through. My mother was diagnosed with polymyositis at 46. She was started on prednisone. Every year she got worse. They tried to take her off of the drugs but the symptoms just kept coming back. Because she was on the steroids for five years her immune system was serverly compromised. We took her to the hospital where they told her she was poorly malnourished. She lost so much weight because she picked up a parasite. Now because her immune system was so poor her body could not fight the infection of the parasite. She got an infection in her blood stream and was in a coma for two weeks in the ICU and went into septic shock. The doctors told us she would not make it. She came out of the coma and they said it was a miracle. She was transferred to a Rehabilitation facility and we had her for 3 more weeks until one night she was having trouble breathing and we had to rush her to the hospital. She has a mass over the entire left long ( pneumonia). God took her home hours later at the age of 51. My mom lived with the illness for 5 years.
Exercise, try to get off the steriods for the long term they cause more damage than good, check your lungs and take vitamins.You need a strong immune system to fight this horrible illness.
Exercise, try to get off the steriods for the long term they cause more damage than good, check your lungs and take vitamins.You need a strong immune system to fight this horrible illness.
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I am a 49 year old who was diagnosed at age 5 with the 'adult' or 'harsh' versions of polymyositis and dermatomyositis. I was so bad I was in a wheelchair, had difficulty eating, could not get out of bed or off a toilet without assistance. I woke at night paralyzed running high temperatures and muscles in a lot of pain. I took high doses of prednisone for years (12 pills a day) and my body became immune to steroids while causing insomnia which I still suffer from.
I was admitted to a research program in MD at NIH and put on a then experimental drug called Aziothioprine. As funds were cut and I was left without doctors while trying to go into remission; I ran into a research person on a plane who stressed taking high doses of vitamin c multiple times per day. I figured why not since they had since found this disease is related to immune system disorders. I began a regimen of this while they cut back on my meds. I also decided to not live in fear but rather FAITH. I have been in remission for about 30 years. Today I LIVE and like to spread HOPE that remission is possible. Do I fear it coming back? No, why borrow trouble. Live each day to its fullest without regret and find a career that gives you passion not stress.
I should note, I am a unique case in that I am also allergic to almost every anti biotic. I try to mitigate my contact with sick individuals as my body takes longer to recover than most. I also rely on homeopathic treatments like netty pots, tea trea oil etc. as I find these help in the resistance to my chronic sinus and bronchial issues.
I was admitted to a research program in MD at NIH and put on a then experimental drug called Aziothioprine. As funds were cut and I was left without doctors while trying to go into remission; I ran into a research person on a plane who stressed taking high doses of vitamin c multiple times per day. I figured why not since they had since found this disease is related to immune system disorders. I began a regimen of this while they cut back on my meds. I also decided to not live in fear but rather FAITH. I have been in remission for about 30 years. Today I LIVE and like to spread HOPE that remission is possible. Do I fear it coming back? No, why borrow trouble. Live each day to its fullest without regret and find a career that gives you passion not stress.
I should note, I am a unique case in that I am also allergic to almost every anti biotic. I try to mitigate my contact with sick individuals as my body takes longer to recover than most. I also rely on homeopathic treatments like netty pots, tea trea oil etc. as I find these help in the resistance to my chronic sinus and bronchial issues.
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This is such a breath of fresh air. I too have been diagnosed with polymyositis in April 2015. I find it hard to walk but I push myself even when it hurts. I've lost a lot of my independence scared to fall. God bless you both.
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my dad has polymyositis and he has had it for almost 20 yrs. he is in a wheelchair and he has to be fed. he can no longer do anything for himself. if he had know the facts years ago he could have stopped the progression. if you start strength training now it will not get as bad. work out as much as you can. his endocronologist told him that. get well educated. you need to be prepared.
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Thank you for your info. I was diagnosed two years ago and I am 80 years old. I am struggling., this has gone into my lungs and I have no energy Cant lift my legs to get into bed. Not a nice thing to have except I am old with this and I am so glad it didn't happen while I was young I read how so many young people get his and my heart goes out to them. So sorry for your loss.
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I also have been falling a lot. My feet are so clumsy and my legs don't want to move.. I have a hard time turning over in bed and I have to use a hospitable bed to help pull my self in. Some times I cant lift my legs. I have read were a lot of you can exercise. I just don't know how you can do this I am so tired and the prednisone make me so ill I know it is poisoning me. I gained so much weight. .I turned 80 Last week so I am old with this. I am so thankful I didn't get this when I was young. My heart goes out to you all I wouldn't wish on any one.
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I have not heard of any one recovering. It tames it self down and than comes back like vengins.
Than all over again you go through your legs not working and so tired its hard getting off the toilet the weakness that comes over you, you just want to cry and there is nothing you can do.I wish I could exercise and I feel like I should but it doesn't happen. Gained a lot of weight and that does not help.I am 80 Years old and just wore out. Sure taking a toll on my kids. Thanks for letting me vent.
Than all over again you go through your legs not working and so tired its hard getting off the toilet the weakness that comes over you, you just want to cry and there is nothing you can do.I wish I could exercise and I feel like I should but it doesn't happen. Gained a lot of weight and that does not help.I am 80 Years old and just wore out. Sure taking a toll on my kids. Thanks for letting me vent.
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My boyfriebd is 23 yes old.m he was diagnosed at 22. Were so scared.. His cpk was 3,000 the normal is 300. It hurts everyday to see him struggle. I try to stay positive and cry only when I'm alone. He has hard times standing from sitting position. We started range of motion and he starts therapy this week. He take predisone, methotrexate, and folic acid. Is there anything we can do to help, like a diet or certain exercises? I'm so scared I can't imagine life without him. I really need help. Will he ever be back normal? Will he ever be able to stop taking medication. Its like we have the worst Dr ever. You guys gave me hope. He's even scared to have children. I pray we see the age of 80 together I'm a firm believer of god. I'm praying everyday. Please give me some kind of advice anything is greatly appreciated
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