Post Juvenile Dermatomyositis Muscle Calcinosis Treatment?

Posted by mclendineng @mclendineng, Apr 10, 2020

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

John, Volunteer Mentor | @johnbishop | Apr 10, 2020

Hello @mclendineng, Welcome to Mayo Clinic Connect. I have no experience with your health condition but there are a few other discussions that you may want to join to meet members discussing similar symptoms.

> Groups > Autoimmune Diseases > does anyone have Dermatomyositis? I'm going for my muscle biopsy.
-- https://connect.mayoclinic.org/discussion/does-anyone-have-dermatomyositis-im-going-for-my-muscle-biopsy/

> Groups > Lung Health > Dermatomyositis
-- https://connect.mayoclinic.org/discussion/dermatomyositis/

While we wait for other members who have some experience to share with you, here are a few sites I found that may be helpful.

Dermatomyositis with Extensive Calcification in an Adult: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3298200/
The Presentation, Assessment, Pathogenesis, and Treatment of Calcinosis in Juvenile Dermatomyositis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5118224/
Calcinosis: https://www.myositis.org/about-myositis/complications/calcinosis/

I know you must be difficult dealing with all of the different symptoms and trying to find out what will help. Which symptom is the worst for you?

mclendineng | @mclendineng | Apr 10, 2020

Hi @johnbishop and thx for replying! I would say the thing that bothers me most right now is the pain in my legs from the calcinosis. It isn’t constant but I do have to be careful to have just the right kind and amount of activity. At other times, it’s the burning nerve pain in my legs and sometimes the calcinosis pain sets off the nerve pain. It’s always a balancing act. I’m not nearly as bad off as I could be. I’m pretty functional as long as I don’t overdo. Have a blessed Resurrection Sunday! Hope you are doing well yourself.

Kelly Hahn, Connect Moderator | @kellyhahn1 | Apr 10, 2020

Hi @mclendineng. I know John already said it- but Welcome to Mayo Clinic Connect. I'm so glad you are here. I read your post and wanted to tag @buttons and @dbdeer, both are members who have dermatomyositis.

Also, I'd like to ask other members in a similar discussion if they, or a loved one, have experience with calcinosis from juvenile dermatomyositis. @kgoodwin9 @pinkmk @johnnyv46 @vcornette1. @fuzzybadger and @bessie87 do you have any suggestions or input?

Mclendineng says that the pain in her legs from calcinosis is especially bothersome. @kgoodwin9 has also been dealing with calcinosis.

Cmlendineng, You may also wish to follow the Neuropathy group (where many members are talking about small fiber neuropathy and CRPS. See here: https://connect.mayoclinic.org/group/neuropathy/