Patient Comments: Polymyositis - Personal Experience


Please describe your personal experience with polymyositis, including how you've coped with symptoms. Submit Your Comment

Comment from: Shelly, 45-54 Female (Patient) Published: February 21

I am a 50 year old female, I have just been told I have polymyositis. I'm waiting to see what medication will be offered. I've always been fit and active. I noticed joint pain about 2 years ago and in the past 6 months I've lost weight and noticed muscles weakness. It's hard to walk for more than 5 minutes and walking upstairs is challenging. I've been eating well and taking stacks of supplements but still feel so tired and weak. I have 2 wonderful dogs and thankfully I have to push myself to take them out. My husband and children are so supportive. My mother is 84 and has more energy than me. I want to be able to take care of her when the time comes but at the moment I can’t see how I could do that. I want to know if the medicines will give back the strength in the muscles and if they will take away the stiffness. I'm so scared of taking them. I am a very positive person but on days like today I just want to curl up in a warm bed and sleep.

Comment from: Aqua D, 25-34 Female (Patient) Published: December 29

I was diagnosed with polymyositis (PM) in September 2015 (27 years old at the time). I was struggling with severe pain, unable to swallow, tightness and weakness for months before being diagnosed correctly. By the time I was admitted to hospital, I could not walk and could barely move. My creatine kinase (CK) levels were over 13000. After 1 month in hospital and another two in rehabilitation, I was able to walk and do most things one does for daily living. Still very weak at the time, I was determined to build up my strength. Unfortunately a few months later I hit another bump in the road, the vast amount of cortisone I was taking for the PM caused osteoporosis in my spine, leading a vertebra to collapse. This resulted in a spinal fusion surgery. A total of 5 vertebrae were fused (April 2016). I was now trying to deal with the recovery from the operation as well as the PM. Long story short, the doctor was happy to eventually take me off the cortisone as my CK levels reached the normal range. I lasted 6 months off the medicines before my levels started creeping up again. This led to another dose of cortisone (6 months). I just weaned off this second batch (December 2017), hoping to stay off of it longer this time. But all in all I am doing well, still doing a lot of physiotherapy to keep me mobile and strong. It's been a long road but I am at a good place. Managing to gym 5 times a week. I can do everything I need to do in my daily living. I still have weakness issues in some areas, arms and upper body, but the physiotherapy is helping. Definitely getting stronger, it is just taking a really long time. Don't lose hope!

Comment from: Marlayne, 65-74 Female (Patient) Published: March 24

I was diagnosed in 2010 with scleroderma and have been on prednisone, methotrexate, CellCept, plus various other drugs to help control the disease. Recently I found out that I also have polymyositis, and another disease but can't remember the name. My CPK was about 2500 in 2010. With monthly trips to Seattle, and taking my medicines, my numbers went down to 107 in January, 2014. I felt like a million dollars! Then in June 2014, I became violently ill and was hospitalized. The doctors here in eastern Washington sent me home after three days saying they couldn't figure it out. I continued being just as sick for the next three months. I was very weak, couldn't walk, climb stairs, nothing! When I was able to travel to Seattle to my doctor, my numbers were 1185. I went through all kinds of testing and put on 10 mg prednisone. I was already taking 4 tablets methotrexate a week, and 2 tablets 360 mycophenolate. He increased the mycophenolate to 4 tablets a day also. Within two weeks my numbers increased to 1699. I am now on methotrexate injections once a week, 40 mg prednisone and 4 tablets mycophenolate (CellCept). If this doesn't work real soon, he's going to start the IVIG infusions once a month. He said it could be for a few months, or for my lifetime. I am hoping this will help me walk again, and the pain will decrease. I am on hydrocodone 325 mg 4 times a day also. But I find, this isn't helping much with the pain. Sometimes I need to take 6 or more, then I run short towards the end of the month and have to bear the pain so I have enough on my 'bad' days. This is so stressful, but after reading everyone's posts, I feel there is hope. I also feel better knowing I'm not alone. Thank you!

Comment from: Patient, Female (Patient) Published: November 07

I have polymyositis for the past 11 years. I am currently on 10 mg of prednisone and CellCept daily and my CK is currently 600 although it goes up if I stop or reduce the prednisone. When the disease was diagnosed it was more than 3000. I am exercising regularly to build my muscles. It is very difficult to stand up from a seated position or to get in my car without aid. I am a teacher and all the learners at school, my doctor, and family are very supportive.

Comment from: Carl, 45-54 Male (Patient) Published: March 11

I"m a paramedic and was given the news that I had polymyositis about five years ago. I have pain every day and have a hard time getting up to go to work, I don"t know how much longer I can keep this up. I"m having pain in my neck, chest, hip, and legs; to get in my car I have to lift my leg with my hands. My CPK are 1400 and I"m on 10mg of prednisone. I’m also always clearing my throat and my doctor has bumped up my 10mg to 15 mg.

Comment from: Winny, 25-34 Female (Patient) Published: July 26

I am 31 years old and just had two children of age 2 years and 6 months, and am married also. I have been diagnosed with polymyositis by an emergency room doctor but that was only based off a CK (creatine kinase) of 736, all my other blood work came out beautifully. The symptoms began in pregnancy when my chest started to hurt, my hips hurt but I thought it was because of the baby. After I had the baby my hips still hurt. I quit my job to stay home with the kids and noticed it became difficult to pick them up, or get the stroller unfolded.


The term arthritis refers to stiffness in the joints. See Answer
Comment from: Mar, 25-34 Female (Patient) Published: May 08

I was recently diagnosed with polymyositis. I am scared.

Comment from: Pauline, 65-74 Female (Patient) Published: June 07

I have had polymyositis for many years. It came to the surface when I reduced down the steroid dose level, now going into six years in IVIG monthly and anti-rejection drugs 3 times a day. I have issues climbing stairs and balance, lifting arms above my shoulders, and walking distances. I have a heart beat issue as well. I am now getting around better than six years ago when I could not even stand up. A frustrating disease. This is not a common disease in Australia.

Comment from: Lucky Lady, 55-64 Female (Patient) Published: March 04

Fit and healthy, I walked to work every day which is 5 km. I noticed that my pack was hurting my shoulders and if I leaned against the wall I had pain. Within two days my arm blew up and the doctors sent me to see if I had deep vein thrombosis. I didn"t of course and was told that I had probably pulled a muscle. Over the next couple of days the swelling grew and then started on the other arm so off I went back to the doctor. He looked at me and said that he thought I had Lupus and sent me to a specialist. She sent me for blood test and admitted me for a drip as I was having difficulty swallowing and was dehydrated. She arranged for a swallow test the next week. By that time I had lost 10 kg as I could not swallow and had difficulty breathing. After the test I got a call from the specialist saying that I was to be admitted as the swallow specialist said I was at risk for polymyositis. I was in hospital for a month. They started me off on 1,000mg of prednisone infused. They were wonderful, did every test under the sun to make sure nothing else was wrong. I was fed through a tube in my stomach. Even when I eventually got back to work I was having to use the stomach feed overnight. I am back at work part time, but now walk the 5 km every morning. I have got the prednisone down to 6mg and 10mg methotrexate by injection. Unfortunately my lovely hair has mostly fallen out. I get the shakes and a horrible metallic taste in my mouth, I have to wear a pad for leaking. I no longer fall down the steps because my legs won"t support me and put a hole through my chin because my arms were too weak to save me. Yes I have bad days but work is supportive and so I don"t go in. Fortunately those days seem only to last one day at a time. I thought I was going to die and I didn"t. I have not let this beat me. Don"t you either!

Comment from: Syed, 35-44 Male (Patient) Published: June 09

I was diagnosed for polymyositis 2 years ago. I used to be an active athlete. Everything started with arthritis. Although I am exercising and maintaining a controlled diet my steroid intake has not reduced. Now I am scared of even walking normally on the streets out of fear of falling down. Absolute weakness in both upper and lower limbs. I am on 15 mg prednisone.

Comment from: Bird, 45-54 Female (Patient) Published: November 11

I was diagnosed with polymyositis (PM) when I was 46 in 2009. Six months before this I was diagnosed with rheumatoid arthritis. The first course of treatment for the PM was to up the dosage of prednisone that I was on to 60 mg I believe. Eventually, I was taken off methotrexate and had infusions of Rituxan which worked very well and put the PM into remission until earlier this year when the PM came back slowly. I just started Imuran so not sure how that will work at reducing muscle weakness. I currently also have trouble breathing but my lungs are fine. I will soon get a stress test for my heart.

Comment from: Jane, 75 or over Female (Patient) Published: September 16

I am an 87 year old female, diagnosed with polymyositis after almost a year of testing. My symptoms were difficulty swallowing, trouble walking, upper back pain, lifting anything even remotely heavy, lifting my arms above my head and terrible fatigue. I was beginning to feel like a real hypochondriac. I also attributed all of these things to my age and the fact that I was the caregiver for my husband who had dementia. My primary doctor was stumped and sent me to a rheumatologist who took many blood tests and found my muscle enzymes were 6,000 and at they should have been 250! He immediately put me on 60mg of prednisone. After months of more tests to make sure it was not something else the diagnoses was finally made. I have been on prednisone for 8 months and my enzymes are now down to about 1300. I am also on Imuran. At the moment I am on 10mg of prednisone and 50mg of Imuran. I have had physical therapy which has also helped and I am continuing exercises on my own. I am feeling so much better and have regained some of the weight I lost. It is very unusual for someone my age to get this disease, but I feel very optimistic and intend to follow doctors orders and enjoy the rest of my life!


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