... disease suddenly went into remission. I've lived with the changes to my body since then. Now, as I age, I'm wondering if anyone knows the chances of it coming back? I'm terrified that it will
I have DM (dermatomyositis) and PM (polymyositis) and I go online to the myositis association. If you have never been to their website I would recommend doing so as it has so much information and support. There are also meetings you can attend in different states/cities. myositis.org.
Wishing you the best,
Aeylin- I have been in remission for 30 years. I was diagnosed with juvenile dermatomyositis at age 7. I understand your fear at the slightest muscle ache or fatigue I freak thinking I am sick again. The chances of getting sick again are small. If you feel bad have your Dr. Test your ck levels for peace of mind. I do yoga if I start to feel muscle fatigue or weakness it helps.
I was diagnosed when i was 10 and went into remission around 15. Around the age of 30, I started showing signs again and quickly had my CPK levels tested. My levels were elevated but never got as high as when i was a kid. I was put on methotrexate for 6 months and when that didn't bring my levels down I was switched to Imuran. My levels have returned to normal again but i still get a flare up in my legs or arms once in awhile by the calcifications I have. I know the fear you are feeling and the advice i can give is just listen to your body. Don't hesitate to get tested if you start feeling lousy .
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