Hi I was diagnosed 4 months ago, my main complaint was shortness of breath on exertion, and then the muscle weakness developed. This has improved with medication, but I have noticed lately that the large muscles that go over the knees are getting really tight, as though they are losing their elasticity. Is this normal? If I sit in a certain position for just a short time, getting moving again is really difficult, the muscles are really painful until I get moving. My hands are also really swollen and painful to move my fingers, especially if I try to make my fingers into a fist. I seem to mention my symptoms to my consultant, and he just nods and writes things down, but he never reassures me that this is to be expected, will improve, will respond with a certain treatment or offer any reassurances. They have been disappointed with the response to the 6 months of cyclophosamide that I have just finished, and have now started me on azathiopine 25mg. I'm currently on 15mg pred. I am starting a short course of hydrotherapy next week, which I hope will help with the muscle pain, but would be grateful for any advice, and also to know if what I am experiencing is normal for this disease Thank you Ali x

Hello Alison, i was diagnosed one year ago with anti-Jo1. I began a treatment in june 2009 and now i take 10mg of prednisone and 100mg of Imuran. My doctor explains to me that prednisone thin muscles if i do not practice sport at least 30 minutes everyday. In reality i have no time to practice physic activity everyday so i have notice that my muscles are losing their elasticity and thinning. So i think it is one of the many side effects of prednisone if you dont have any sport activity With Imuran, my hairs are very strange and thinning. I have some trouble of skin too. Fortunately, the treatment have reduced my muscular pains et stabilized my lung fibrosis. Me too, if I seat in a certain position for just a short time, getting moving again is really difficult, the muscles are really painful until I get moving. I hope hydrotherapy will help you. Tell us if it works. As you read, my english is not so good i hope you understand what i want to tell you. Cécile x

Hi Cecile Thank you for your reply, your English is great, and your reply was really helpful. It is interesting that you have been told to do 30 minutes of exercise a day. I have been asking so many people if I should be exercising, and to what level. Whether to work the muscles hard to try to build them up, or whether to take things gently so as not to damage the muscles. Its so frustrating not to get a straight answer! I think the doctors do not really know. How have you been on the Imuran? I think my dose is too low at the moment (25mg) but wait to see the doctors next month to hear if I need to increase it. Take care Ali x

Hello Ali, my doctor asked me to take things gently about exercice. He adviced me to walk or swim 30 min everyday. i am on Imuran to reduce the anti Jo1 and because high dose of prednisone alone is dangerous for the body on long term. My doctor explained to me that Imuran replace prednisone's effects gradually with time. He considers that imuran is effective after 3 months, and at this time he have reduced prednisone dose gradually. In reality, i don't really know if imuran works. I have some exams next month to control the evolution of the lung infection. For the moment, i m well with Imuran but i think hair thinning and skin troubles in my face are due to Imuran side effects. I hope everything will be fine for you. i know its difficult to be in confidence with the doctors because they contradict each other. I think, sometimes, they don't really know what they do so i asked them so many questions to make the good choices for my health. Take care, Cécile X