Hi Miranda. I am sorry you have DM but there is life after DM with treatment. Most Rheumatologists will start their patient on Prednisone and add something like MTX about a month later. We are all different and respond to our Meds in different ways. MTX works faster than the other Meds but is not the med of choice if you have any lung problems. For this reason autoantibodies are checked and usually a chest CT scan with contrast is done as part of your full work up at diagnosis. The full work up with many tests is done to look for any underlying cause of your DM. I have PM so I don't have the rash part but everything else for treatment is the same. The people on here will all help you along the way and you will find much information on the TMA Myositis site. Very best wishes to you as you begin the journey to get well. Autumm

Hi, miranda819, and welcome to this forum of nice people. As autumm mentioned, usually myositis patients are started on high-dose prednisone, with other meds added. The prednisone works quickly, and the others can take a few weeks to months to kick in. Different doctors utilize different protocols, and our individual bodies respond differently. With DM or PM, it's usually "trial and error" for awhile until our doctors figure out what is best for us. The important thing is that you received a diagnosis and are beginning treatment. Please keep us informed on your progress. Best wishes to you for quick improvement.

Thanks for your replies. It has taken me a whole year and a ton of doctors and test to finally get this DM diagnosis. I started at a neurologist thinking I had MS due to the muscle spasticity and pain. Over the past year I've had 2 MRIs, lumbar puncture, 2 EMGs and 2 nerve conduction studies, 3 hole punch skin biopsies, and what seems like gallons and gallons of blood labs. I did not have a 'normal' presentation of DM. My rheumatologist thinks I developed DM from having rhabdomyolysis a few years ago. His thinking is that once I damaged my muscles so badly, my immune system turned on and saw my muscles as an invader and decided to go after them. My last symptom to show up, in Jan, was the eye rash. I have had a high resolution CT scan last week, right after my dr appointment. I will also see a pulmonologist this Friday to make sure there is no lung damage. My dr is not starting me on any steroids, just the plaquenil and methotrexate to start. If those medications do not do the trick, then he will try Imuran/cellcept and finally IvIg, rituxan, or cytoxan. Due to the intense muscle weakness, pain, and trouble ambulating, I have been out of work for a whole year. I'm a Registered Nurse and I miss being the caregiver. Thanks again for your responses.

Hi Miranda. Diagnosis for PM/DM does take time but you are there now. The best thing I see in your post is that you have a very good Rheumatologist. What he is saying to you makes complete sense and checking your lungs with CT contrast is an absolute must but so many Rheumatologists don't do it. All the research studies suggest this is done when the Rheumatologist suspects this may be the diagnosis. I wish you well, you are in good hands, we are here for you to help along the way. Best wishes. Autumm