r/Myositis

My 6-year-old son was recently diagnosed with Anti-MDA5 positive Juvenile Dermatomyositis with ILD (lung involvement) and we are honestly overwhelmed and looking for experiences/advice from anyone who has dealt with similar cases.

Current findings:

Anti-MDA5 strongly positive

Ro52 positive

HRCT showing ILD with:

Organizing Pneumonia (OP) pattern

possible NSIP pattern

progressing upper lobe involvement

Recent complication:

pneumomediastinum (air leakage)

possible small pneumothorax

Currently admitted in hospital and on high-pressure oxygen support

Symptoms/history:

Child was surprisingly active and playful until recently

Mild cough (especially while speaking loudly)

Oxygen around 94%

No major muscle weakness clinically

Current confusion:

Some doctors wanted immediate aggressive immunosuppression (high-dose steroids/rituximab etc.), while others wanted more evaluation first. Lung biopsy was discussed initially but now most specialists feel diagnosis is already strongly supported by antibodies + CT pattern.

We have consulted:

Pediatric rheumatologists

Pulmonologists

Thoracic radiology opinion

Currently under treatment locally due to emergency admission, while also planning consultation with Dr. Raju Khubchandani.

Main questions:

Has anyone seen pediatric MDA5 ILD improve significantly with treatment?

How reversible is OP/NSIP inflammatory pattern if treated early?

Any experiences with pneumomediastinum in MDA5 cases?

How long did oxygen dependency last if present?

Any advice for parents navigating this emotionally and medically?

We understand this is a serious condition, but we are trying to stay realistic while also hopeful. Any experiences, insights, or guidance would genuinely help.

My 18 year old son just received a positive myositis nxp2 ag result. He has extreme weakness with muscle atrophy. He is no longer able to stand up from a chair without using his arms.

We are in the middle of lots of doctor appointments. Meeting with neuro tomorrow to discuss the plan and schedule a muscle biopsy to confirm the diagnosis.

Information on the sub type is little harder to find on the others. Does anyone have any insight? Is there hope with IV infusions he will regain muscle, movements and regain weight?

It’s has been one hell of a month fighting for him.

About 2 years ago exactly, I was diagnosed accidentally in the hospital when I had cellulitis and they tested me for everything under the sun. No one really spoke to me about it and none of the nurses on my floor even heard of it. I had seen a new primary care doctor and he did not really seem interested in going down the path of learning more about my diagnosis. Fast-forward to now a year later and I progressively am feeling weaker and I have the worst rashes, but none of the creams I have gotten from a dermatologist have helped, and all of my blood work came back normal again so I cannot get a appointment with a rheumatologist since everything seems normal. Is there anything I can do to actually help heal my skin and manage this pain? I do work out multiple times a week, I did physical therapy for a few months to help me get stronger and I do the exercises at home as well. It just is getting annoying that no one seems to actually want to help me and I’m so sick of it!