Polymyositis: The evolution of this diagnosis in light of recent research

Dr. Lisa Christopher-Stine joined MSU live online for Myositis Awareness Month, May 2018. Discussion includes polymyositis, necrotizing autoimmune myopathy (immune-mediated necrotizing myopathy), inclusion body myositis, Bohen and Peter Classification and the new myositis classification, autoantibodies, overlap syndrome, and a great overview of the idiopathic inflammatory myopathies.

[rigmorhviidchristensen]

I do wish, that danish doctors were aware of this video!

[michswags]

I am NOT a doctor so I will simply say I appreciate you sharing information so interesting..informative and education.

[kpkbkpkb]

I'm struggling 14 months out from antibody negative DM diagnosis on methotrexate and IVIG. My struggle is severe, debilitating tenosynovitis. I'm considering going back on prednisone. I always have had forearm and hand weakness and edema and stiffness. Scares me that maybe my diagnosis is wrong, but my muscle biopsy shows PM/DM characteristics, no inclusion bodies. Now I have ankle swelling, tendinitis, calf weakness. This lecturer keeps saying "proximal" muscle weakness but I've had both proximal and distal. Also, my right side has led the charge, with my left muscles lagging behind. I was in a massive ski accident just before I got this disease and the snow boarder slammed into my right side of my body causing severe injuries, so I wonder if that's why my right side leads the symptoms.

[sarahhill]

I’ve had PM for seven years now, anti jo-1 positive. I also have lupus and SS. I also have ILD and am waiting to have a tests for heart involvement, pulmonary hypertension . I found this very insightful thank you. I’m from England and have to say I’ve had to do a lot investigation into this disease myself.

[freedomuk]

Are we hamsters to be tested on i suffer from this took treament for 3 yesrs and made my muscles worse

[judahiam]

Addendum: Please assess nasal spray ketamine for people like us... I read about it. It sounds better than opioids. We need coping tools. Please advise.


Mechanic's hand: The hands I get, working in moderately cool shop conditions I will get Raynaud's spasms so bad that I cannot hold tools and my fingers scream with pain if I don't warm them with a heat source. The name fits. However, my feet won't spasm if I'm walking around, they go into the vascular spasms when driving - not when hiking - my hands will Raynaud's flare when hiking, but my feet will be fine. Standing at a bus stop, in the winter, bring on a terrible pain I imagine to feel like frostbite would but there's no evidence of frostbite just PAIN that goes away after warm-up... Hiking foot would not be a perfect term. I think of my extremities as having a hair-trigger for hypothermia/hyperthermia. I overheat in the sun/heat and get a fever from the sun. I'm an obvious vampire who needs to hang upside down to be comfortable or go live in the jungle but stay out of the light. I sometimes think I should learn to walk on my hands. I am undiagnosed with severe muscle pain in Canada. My doctor refused to order EMG or biopsy or sonogram. Because I'm still able to walk and lift my arms, but that's going to fail I feel it getting difficult to get out of bed and turn over or lift my arms over my head. My Grandmother died paralyzed and her heart failed, they said unknown peripheral neuropathy. My family has cerebellar neuropathy in autopsies. My mother has no feeling in her legs. I have severe pain in my muscles around my arms and legs at my spine, but my hands seem fine. Big pain in my neck. My spine is very painful. Yet my bloodwork is good, no enzymes, so no tests justified. So much pain... losing function. Grateful that is slow to progress. I may have another decade or two before my heart stops like my grandmother, or my legs and arms stop working :) Oh well. Can't treat it anyway, might as well eat a peach. Damn my neck flexors are sore 24/7 drives me nuts

[sherleyl]

I'm 33 yrs old. I'm also Srp myositis and my previous doctor opted out on treatment me with Rituxan. They waited for me to get weak, became unable to stand, walk on my own until they decided to give me the infusion. I had to go on disability while my job is put on hold. I'm still not able to stand on my own 8 months later now. I'm on IVIG monthly and have no idea wether I'll be able to walk again. I find it hard to trust doctor who treats you as a case study instead of treating you as an actual human being. I will be starting Rituxan next month hoping for a change, any advice please?

[himesakura]

I'm anti-SRP PM patient..having the symptomss in Nov last year, but first dx in Feb 2018 (couldn't. walk anymore during this time). Started to walk again last month (April) after taking cyclophasphamide...feeling grateful for being able to walk and function normally again, but at the same time I'm afraid of the side effects of that cyclo.

[NimaTproductions]

My mom has been diagnosed with polymyositis for 15 years... she’s been constantly in and out of various doctors who just put her on cortisone. She hasn’t improved any and recently she has been coughing a lot, having some lung complications ..Her CPK spikes up when they lower her dosage of cortisone . Are there any natural alternatives or medicine with less side effects ? Any help would highly be appreciated!

[talarisushma]

I was diagnosed with myosities..cpk 1000 and sgpt 144..I can walk slowly but cant stand and climb stairs without support..given steroids and folitrax..am in medication since 1month..how long it takes to get cure..pls suggest me

[cathygriffin]

Would I have Myositis when my muscles tighten up and last for 20 minutes or less and I have to use ice to relieve the tightness or cramping? I have it more on my legs, front and back, thighs and calfs

[zebinmarais]

Is it possible for this to occur in combination with FSHD, or will it always be either the one or other?

[yelenadagnese]

Please I need help I am in pain my face is red with a pause it is in flames my hands hurt can I pick up my shoulders my whole body hurts it feels like I’m going to die please help me

[myac]

They just did the first diagnosis for my mom and said Als and to get a 2nd opinion but she has all of the polymyositis symptoms without treatment for 6+ yrs i mean everything she went through. They refuse to do a muscle biopsy and now in her 60s she is obviously chronic i wish someone could help us . she has strong neck and head and can walk but falls.

[rubigloria]

Oh thank you so much for sharing and teaching us people that have this desease PM. I was diagnosed with anti Jo-1 3 years ago. I have the problem with breathing as well. I’m currently on and off prednisone. But I want to be off completely. But I fear not being able to walk at all. It dose get very hard to stand when I’m not taking the prednisone. So is there any other medication or natural remedy we can take to help us live a mobile life and be able to walk without so much pain?
Thank you again for teaching us and for being so kind and sweet in this video. 😁

[nihalsingh]

My mother is pm with srp positive she was suffered from march now october but she cannot walk by itself what we do 2nd dose of retuximab was given to her by november 1st was given on may it is right?? Please reply

[Bhaktisagar]

After accident In my thigh polymyositis