Red Light for Myositis

I haven’t tried red light but was on a myositis foundation zoom last week and ask the doctor session and he discussed it. The zoom may be recorded on their website

Recently diagnosed with dermatomyositis NXP-2 and Jo 1. Waiting to have several tests scheduled. Extremely weak, using walker as thigh muscles are deteriorating.

Thank you very much. Was it a webinar or conference presentation? Do you have the name or date? Too many there, hard to find without a direct link. Mine is in quads and glutes too. Have you tried IVIG? I have not. Prefer less drugs vs. more, so looking into ARRC LED.

I’m interested in learning more about red light therapy for muscles as my legs are quite impacted. I am positive for MDA5 antibodies and they are monitoring my lungs. The MRIs don’t show myositis in my legs, yet they grow weaker every day, with pain and balance issues.

Hi, I'm also, interested in learning if anyone has tried red light therapy.
I have been told by several doctors, Rheumatologist and Dermatologist, that it won't work since red light can't penetrate deep enough through muscle tissue. I am positive PL12, RO52. Lungs and skin are stable with Mycophenolate, but leg muscles (quads / glutes) are very weak and painful. I feel they are getting worse. My inflammation markers are all stable, Leg and pelvic MRI shows no inflammation as well. I have an upcoming spinal lumbar MRI and consult with a neurologist since they are now suspecting nerve issue, unrelated to Myositis. I have no back pain, just legs. Feels like myositis to me.

@gardengal7 Welcome to Mayo Clinic Connect! I’m so glad that you found the site. This is a very large group of people who share concerns experiences about their medical situations in order to help others. It’s a great teaching/learning forum for everyone.
https://connect.mayoclinic.org/comment/1532977/. This comment from earlier talked about red light therapy, so check it out!
Can I ask what MDA5 stands for?

HI Becky - I could never find the doctor session from the Myositis.org zoom (week prior to March 22) mentioned in the previous thread and post you referenced. If you know where the direct link is, kindly forward. Thanks so much!

@becsbuddy thank you! Here is a definition from the internet: Anti-MDA5 dermatomyositis is a severe, autoimmune subtype of dermatomyositis characterized by the presence of anti-MDA5 antibodies in the blood. Named after the Melanoma Differentiation-Associated gene 5—a protein that normally senses viruses—this condition triggers a massive inflammatory response. It is most well-known for its high risk of causing rapidly progressive interstitial lung disease (RP-ILD).

@elisaonthego Sorry to hear about your leg issues. We share similar issues: leg problems with nothing on MRI; a recommendation to go to neurology. My rheumatologist doesn’t think it’s nerve related so I’m holding off for now (till my next pulmonology appointment in a little over a month, when I find out if I have interstitial lung disease). Going to get a puppy and train it to be a service dog. Keep us posted!

Hi - can I ask if your rheumatologist doesn't think it is nerve, then, what does he think? Does he think it is myositis?

@gardengal7 have you been on steroids for a while? If you’re growing weaker but an MRI shows no inflammation in the muscle you could have developed steroid myopathy which causes weakness in the proximal muscles.

I have both steroid myopathy as well as muscle pain from my underlying autoimmune conditions which include Tif Gamma DM, so it took a battery of tests, cooperation between my rheumatologist and a neuromuscular specialist, and finally a muscle biopsy to finally understand what was going on - turns out adrenal insufficiency was also playing a part in the weakness when I was trying to taper. Just something to look into if you’re on Prednisone or Medrol every day.