How Myositis affects the Heart and Lungs, Dr. Tahseen Mozaffar

This was a session at The Myositis Association's 2018 Annual Patient Conference in Louisville, Kentucky. Whether caused by your myositis, your medications, or some other factor, heart disease and lung disease can be a cause for concern for the myositis patient. Learn how myositis affects these other organ systems and what you can do to avoid serious complications.

[@Kitkat2870]

I think, so far, this is the best video I've come across explaining heart, lung involvement in myositis and what other risks may occur like cancer etc..

[@lindseylynch2368]

I agree!

[@mousse425]

Very well described . Thank you

[@elaineslavens8374]

Excellent video very informative p I wish I lived in Southern California so I can become a patient of his

[@rockykoast7065]

I found this super informative. I have a recent tentative IBM diagnosis.

[@user-xd8pj2mm4t]

Have COPD, Osteonecrosis,High blood pressure ,my body burns like hell

[@45MommaThe]

Dr Aaron Eggebeen is a great rhuemetlogist, Dr Twidell is a awesome neurologist. I am frustrated.

[@kpkbkpkb7768]

I was referred by my local doctor to Dr. Mosaffar but he was too busy to get an appointment with and not taking new patients. I have antibody negative DM with colossally symptomatic tenosynovitis/arthritis of my hands, wrists, elbows, shoulder, ankles, achilles, and knees. This is nuts b/c no one knows what's going on and keep saying that my disabling tendon problems are not a part of DM. I think I must have some antibody that is aimed at tendons AND muscles and skin. I had the classic rash with the weakness at presentation, but also had severe hand and forearm edema at diagnosis too. I wish people knew more about this.

[@dianecrockett3905]

It might be possible that you could have Mixed Connective Tissue related Disorders. Such as Sjogrens Syndrome, or Ehlers-Danlos Syndrome-hypermobile, RA, OA, DDD, or one or two of a bunch of Rare Autoimmune Syndromes.

[@marykotuba6901]

Could this be why i can never seem to pass a breathing test?

[@45MommaThe]

I have been diagnosed polymyositis 2 muscle biopsies, EMG's. Decadron, prednisone, IVIgs, Rituxan, Methotrexate. My CK ridiculously high. I am on bi-pap oxygen, they just stopped the methotrexate. Nothing helps side effect are other auto immune. The inflammation nothing helps. My heart is inflamed. It is a painful thing! Lost no direction to go.

[@fambam4266]

I am also suffering with this it's like thier is no help no one to turn to. I started a KZbin channel to bring Awareness to this. Check it out it's called fam bam! We need help

[@madeleine7]

I am in the same condition! Dermatomyositis is very painful and I am bercoming very weak! Abdominal pain is through the roof, and, I fear I have an Ovarian Neoplasm, Ovarian Cancer.

[@laydeeTeaAurora]

I have the Anti-Jo 1 and I have ILD. I am short winded even breathing sometimes lol. I do have a dx of Polymyositis and was dx'd 9 years. I have been on Rituximab for 4 years but started off with IVIG and it didn't work. I am now using 2 pillows and sleep mostly on my side. I also am using a Bi-pap smh. I am the exact case he is talking about.

[@joeaxford494]

Me too, I have had Rituxan 8 times in eleven years

[@sherleyl27]

Hey dear I've been diagnosed with Polymyositis 3 years ago, I'm on IVIG and it's not working. I would like to ask you about Rituxan. My doctor is talking about my next course of treatment Rituxan and I would like to know about your experience on this drug. I'm currently unable to stand or walk on my own and I'm hopeless

[@joeaxford494]

@@sherleyl27 Rituxan has always worked for me, after Prednisone. Better than Methotrexate, Cellcept, and Imuran

[@web9254]

Is the antibody Anti NXP 2 the same as NXP 2? I have a high Anti NXP 2. I have been told I do not have Interstitial lung disease, yet have been on home oxygen for about 2 months. My blood oxygen is usually between 85-92, even though I am on home oxygen. If I don't have ILD, then I wonder why my oxygen levels are so low ?! I was diagnosed with Dermatomyositis 2 months ago.

[@oliaziz]

yes, it's called Anti NXP 2 but often people just say NXP 2. That sucks that you have lung troubles. If it's not ILD, what is it I wonder?

[@jugabratdeka2191]

*I think my heart is also affected by polymyositis , if it is , I am blessed , At least I will die after sometime.*

[@45MommaThe]

It is a very rare disease. God Bless you in healing and your journey. I am at the crossroad. Live my life out or suffer with more full blast of chemotherapy. I pray someone finds a break through.

[@jugabratdeka2191]

@@45MommaThe what worked for you ?

[@45MommaThe]

@@jugabratdeka2191 nothing, I was just told retry smaller dose of one med that I reacted horribly to, all out assault with chemotherapy or just live my life out. So there is nothing left. My Dr said he would check on research at U of M or Cleveland clinic. No study is being done here. Just nothing left. I ask him are we potentially looking at a different disease. He said it is possible even after 2 biopsies. They looked for body myositis and MD. Biopsy come back Polymyositis Myopathy. If my Drs were not watching and following me close they would think I am making things up. Mine acts like a different diagnosis.

[@jugabratdeka2191]

@@45MommaThe what's ur age and gender ? What are your disability ?

[@45MommaThe]

@@jugabratdeka2191 female, 50. Been fighting for years and tired of it. Think I am just going to live my life out. Too much chemo it just gets more, and more.

[@johnrevelator6345]

1 hour you are kidding? One slide - 1 minute !!!!!!!!!