Hello. I am a 58 year old woman who had JDM from age 4-17. However, I have had so many health problems as an adult that seem related to the damage done by that disease, such as widespread muscle atrophy, foot drop, and severe calcinosis in my leg muscles, as well as some sort of very painful neuropathy that comes in relapses and remissions (small fiber neuropathy or CRPS).
I'm wondering if there are other adults who had a severe juvenile dermatomyositis with some of these leftovers and if so, what have you tried for the calcinosis? I'm also very interested to see if anyone with dermatomyositis has permanent foot drop that began along with the other initial symptoms of skin problems and proximal muscle weakness, suggesting maybe a neuromyositis along with the dermato.
Recently (at least in the last 3 years) the calcinosis in my legs has been getting larger faster and has become painful and sometimes swells and is now causing some superficial vein issues in my calf. There seems to be nothing known that helps arrest the growth of these masses which are now about 9"x3" in 3-4 places in my thighs and calf, and it is encasing my sciatic nerve which is causing lots of pain. If it doesn't stop growing, I envision not being able to sit or bend my left leg before many more years pass. I am on Diltiazem, which isn't arresting it, and I've been on Alendronate for a year or so in the past. I've had rounds of IVIG for the CRPS/SFN years ago, and many rounds of IV steroids and oral Prednisone, along with Methotrexate a couple different times. Steroids help the pain associated with these masses, but they don't stop them growing. I also have pretty severe osteoporosis so steroids are not so much of an option unless I'm in absolute misery.
I'd love to hear from anyone who has similar experiences, or who has children with JDM and calcinosis. Thank you.