JO-1 is commonly found in a subset of myositis and is associated with ILD. Like all myositis diseases except inclusion body myositis most are treatable. Early diagnosis and treatment changes the odds in your favor. While there have been no new myositis specific drugs researchers better understand this family of diseases and are more successful in treating it.
I have both lupus and polymyositis and had an extreme and life threatening case that completely disabled me 7 years ago. Today, I lead an active and fairly normal life and expect to live a normal life span. What type of doctor are you seeing? Is he experienced in myositis? I suggest that you get a second opinion from a doctor who is even if you are happy with your current doctor to see if you should begin some sort of treatment. If you do not want to do that at this time I would just wait but don't hesitate if you become symptomatic. Myositis (polymyositis and dermatomyositis) exhibit a distinct pattern of muscle weakness. IBM is an entirely different disease.
This link is to a paper published on myositis and at least 2 of the authors are on the medical advisory board of The Myositis Association. One is a principal doctor in the Johns Hopkins Myositis Clinic, the only one in the world.
If you have more questions I suggest that you post on www.myositis.org
on their community forums.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.
Remain Optimistic and you can overcome.