Couldn't find what you looking for?

TRY OUR SEARCH!

Hi there! Are there any statistics out there on what the average life expectancy is of those who have polymyositis? I have just been diagnosed and at this point, while I am scared of finding out the truth, I will take any information I can get. I would also really appreciate hearing from others with polymyositis.

Loading...

My father had polimyositis for about 25 years now. He started with the disease when he was about 47, and now he is 72. Any other question please let me know.
Reply

Loading...

I have been diagnosed with polymyositis recently but had it since 2006. The way it started was quite strange. Deep down I don't want to believe that it's truly that and hoping as time goes by that the diagnosis will change. This year will make 4 years since I have been with this disease. It's quite the painful disease when not medicated. The muscles are really attacked hard. I am on prednisone 2 tablets daily and that keeps me mobile. I try to avoid taking too much as it could affect your kidney and lungs. Stay positive and everything will be ok. Just make sure to exercise to keep your muscles up and running, take your vitamins and keep your immune system strong.
Reply

Loading...

About two years ago my husband was too diagnosed with Polymyositis - he was 46. Like you, we were shocked, confused and had never heard of the disease, but mostly we were both scared.
I am pleased to say that with the help of drugs and a great specialist my husband has continued to live a healthy, active lifestyle. He has taken up running and seeing him up on the podium receiving medals at the fun runs you would never guess that a couple of years ago he could not even walk without limping and had trouble putting on a pair of socks! Keep your chin up, get your motivation going and you fight this disease with all you have! They say the drugs cause weight loss so do cardio exercise to combat this, they say it eats away at your muscles so exercise to build them back up. My husband says : "if it wants to eat muscle I will do my best to provide lots of muscle" and that he does by exercising. Yes, he is still on a low dose of drugs, yes - he has not touched a drop of alcohol in two years because you cannot drink whilst taking the drugs, yes he is living with this disease but he is doing his best not to let it effect our lives. I hope knowing this helps you and anyone else newly diagnosed with the same disease that life does go on. It is cruel what life dishes out sometimes but it is how you deal with it that matters - do not listen to negative thoughts and I hope you and my husband both live a very long and active life!
Reply

Loading...

lolly365 wrote:

Hi there! Are there any statistics out there on what the average life expectancy is of those who have polymyositis? I have just been diagnosed and at this point, while I am scared of finding out the truth, I will take any information I can get. I would also really appreciate hearing from others with polymyositis.


My understanding is with treatment there will be little differance from what you would have lived without polymyiositis. I have had polymyositis for 23 years.
Reply

Loading...

Guest wrote:

My father had polimyositis for about 25 years now. He started with the disease when he was about 47, and now he is 72. Any other question please let me know.


How is your dad doing now? It was 3 years ago that you posted this response. My dad has had polimyositis for about 5 years long with arthritis. He seems to be doing worse. He has difficulty swallowing,tasting his food, walking and getting up from a seated position. He is on prednisone and exercises on a stationary bike sometimes. Do you have any advice?
Reply

Loading...

Hello, I just met someone who is told he has polymyositis. He is 19 and has had it for two years. I don't know too many details yet but I was wondering if someone could tell me some of the finer points of this disease so I can help him when he needs it and hopefully, be more understanding of what he is going through.

Reply

Loading...


I also would like any information.I was diagnosed about 2 years ago with overlaping autoimmune diseases ( lupus,polymyositis,scleroderma ).
Reply

Loading...

My dad had polymyositis. He was diagnosed at 51 years old after spending almost a year in hospital getting progressively worse. He was diabetic, contracted mrsa after a nerve biopsy... The list is endless. What ive learned is the key is to catch it quickly, so steroid treatment kicks in. My dads muscles were so wasted that he was practically wheelchair bound, could not go out on his own etc... He had prednisorone, methotrexate and rituximab treatment. It affected his heart and suffered heart attack and heart failure and recovered. I think his diabetis complicated things. The immuno supressants totally depleted his immune system and he got shingles. I very sadly lost him 3 days off of his 56th birthday. Cause of death bronco pneumonia. Eat well, push the doctors, rest, have massages and keep going. My dad was unlucky but definitely suffered more than enough. I truly believe if they had diagnosed the condition sooner he could still be with me now. Thoughts are with you all xx
Reply

Loading...


My mother had polymyositis. I helped take care of her. she was 53 when she was diagnosed. She started having problems with her lungs too. She started having numerous other problems. Shingles and then she had a stroke and brain hemorage after getting thes intravenous treatments for her polymyositis, which they stopped after that happened. I think the treatments caused her strokes. She got what the called mecanics hands and raynoids phynomenal . I know I didn't spell all this right but you can look it up. She had to be put on oxygen because she had interstitiual lung disease(pulumanry fibrosis) caused by polymyositis. We live in Georgia and drove her out to John Hopkins in Baltimore Maryland because they have a Big Myositis clinic hospital out there. Her lungs had gotten so bad we had to try to get her put on a lung transplant lise but because of her swallowing problem and her esapahgus problem lots of places turned her down. We were currently dealing with Duke university and my mom had gotten theses sores on her body in her bottom regions and her heel had split open she was being treated for infection by a dermatogisst.. She developed diabetes as a result to all the meds and predisone. She got really sick and they were going to put her in the hospital like many times before for low sodium and potassium or whatever else she had going on only this time we did not get to take her home. God took her home instead. She apparently got an infection in her blood stream her blood sugar had dropped super low and she had not urinated in 3 days. She went into cardiac arrest and we could not save her I had to let my precious mother go at 58 years old so after they diagnosed her she lived 5 years. I personally think she had it a little while before they diagnosed her. Please stay behind the doctors. Have you lungs checked out good. The earlier the better. My prayers are with you and may they find a cure for this God awful disease one day.
Reply

Loading...


Hi,I was diagnosed with Polymyositis Feb 2011,after having symptoms Sept 2010.I take 7.5mgs of prednisone &75 mgs of Immuran daily. I am 74 years old but I keep active.My wife & I have been doing a very big extension to our home & 95% of all work has been done by us,building frames ,hanging plaster boards ,tiling ,painting & whatever needs doing..I have built up my upper body by lifting timbers & pulling myself into my Bobcat loader come excavator on a regular basis.My thigh muscles have gotten weaker over the last 6 to 8 months,so I will have to spend more time on the stationary bike.I have never had any pain just weakness in upper & lower body areas..I tend to get a little out of breath if I do too much work at times .I have only spoken to one other person with this disease.I live on the mid north coast of New South Wales.
Reply

Loading...


Wonderful! That gives me hope! I was just diagnosed and I wondered if he has had many setbacks during those years.
Reply

Loading...

Just yesterday on 2-28-14 I was diagnosed with Polymyositis. I'm 51 and I've been going to a rheumatologist for 4 yrs. He's been running blood tests every year trying to see if my levels had spiked. Well, it's somewhat of a relief knowing what the autoimmune disease is and how it can be treated. He's starting me on 40 mg of prednisone for 2 wks followed by more blood work. My normal levels should read 200 while they were over 3,000 !! This is scary!! I do have a great deal of faith and a positive outlook. I hope and pray this can be conquered some time.
Reply

Loading...


Hi,I have had Polymyositis for 3.5 years now .I am 74..I lost a lot of weight in first 5 months & a lot of muscle wasting ,as well as swallowing problems.I have fairly well gotten over the swallowing problem & by building a big extension onto our house ,building frames,putting up gyprock,tiling ,painting ,etc & using my upper body to help me get into my Bobcat ,as my legs from groin to knees are pretty weak & have to be careful on stairs & ladders (don't tell the Professors who are looking after me that I climb ladders) They know.I am very positive & determined not to let it get to me.I work every day on our building.I was taking 7.5 mg of Prednisone each day plus 75 mg of Immuran but because my legs were getting weaker it was changed to 25mg of Pred & taken off Immuran & replaced with 1000mgs of Mycophenolate in morning & same at night.I have not had any other sickness since I contracted this disease.Others that I have read about have had lots of pains .I have had none to speak of,so I guess that's a positive.I don't pray as I am a non believer but I have faith in my family & the Professors at Concord Hospital,Sydney, who are the top people in this area.I have a blood test every 3 months before I travel to Concord to see the Professors.I have only come across one other person with this disease in our area.Cheers,Ron.
Reply

Loading...


Hi .The first symptoms I had were Disphagia (swallowing problems ,choke easily)the next was a couple of months later & this was the muscle wasting starting.The wasting is in the upper body & lower body .Through lifting timbers & building, my upper body is better than it ever has been but legs from knees to groin not so good but still get around ok, just got to be careful on stairs & rough ground.I am 74 & work every day.I believe it treats some sufferers differently.Some have a lot of pain & have trouble getting about ,some have lung troubles.I guess I am one of the luckier ones As I have not had any pains just the usual old age stuff.My biggest handicap is if I get down on the floor ,it is hard to get up,due to my weak legs, without something to hang on to.I hope your friend stays positive & does whatever it takes to stay on top.Cheers,Ron.
Reply

Loading...