Thursday, March 15, 2018 1:00 pm – 2:00 pm EST This discussion is archived.

Today we are honored to have Dr. Hector Chinoy with us. He is a researcher and clinical rheumatologist at the University of Manchester in the UK. He is also an expert in genetic and environmental risk factors related to myositis. He was among the many myositis experts who spent several years developing a new set of classification criteria for myositis diseases. We’ve invited him to share his insights about the criteria and how they may change the way inflammatory muscle diseases and their subtypes are diagnosed, treated, and studied. Thank you for joining us today, Dr. Chinoy.

Ask a Question
TMA:

Dr. Chinoy:

Thanks for having me!

  • Myositis Antibodies

    Participant:

    How do myositis autoantibodies figure into these criteria? I see that anti-Jo-1 antibodies are considered; what about others, such as MDA5, SRP, HMGCR, NT5c1A, etc.

    Dr. Chinoy:

    Not a lot was known about many of these when the criteria first started to be developed about 8 years ago, hence their omission. I’m sure that they will be included in the next iteration.

  • PM and Necrotizing Myopathy

    Participant:

    How do these classification criteria distinguish between PM and necrotizing myopathy?

    Dr. Chinoy:

    I don’t think that they do – this will have to be a further iteration for the next criteria.

  • Treatment

    Participant:

    How might these criteria change the way myositis is treated?

    Dr. Chinoy:

    I don’t think that they will make that much difference to the way we treat myositis. They will help to ensure that patients recruited into clinical trials are more likely to have myositis than not, though.

  • Share with Doctor?

    Participant:

    Are these new classification criteria something one should share with their doctor? ...primary care physician? ...specialist?

    Dr. Chinoy:

    Are these new classification criteria something one should share with their doctor? …primary care physician? …specialist?

  • Classification vs. Diagnostic

    Participant:

    I understand these are "classification criteria" not "diagnostic criteria." What's the difference?

    Dr. Chinoy:

    Best place to go is to read Dr Aggarwal’s paper on this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4482786/

  • How is this different?

    Participant:

    What is different about these criteria from the old way of classifying myositis? What makes this a better system than the old way?

    Dr. Chinoy:

    They are more accurate and help to classify patients into different subtypes of myositis. They include biopsy information, as well as specific skin signs.

  • Diagnosis Change

    Participant:

    Is it possible that a person's diagnosis will change based on these criteria?

    Dr. Chinoy:

    Unlikely. Again, clinical judgement remains the gold standard. The criteria are there to help compartmentalize patients for the purposes of clinical studies and trials, rather than to be used as an adjunct in clinical practice.

  • Idiopathic Inflammatory Myopathy

    Participant:

    My 16-year-old son became critically ill this past summer after a case of strep and ended up intubated for 15 days. He recovered well with high dose prednisone. His diagnosis was interstitial lung disease with overlap syndrome (idiopathic inflammatory myopathy). He responded very well on the prednisone and was able to go off the prednisone within 4 months of his intubation. He is on 1,000 mg twice a day Mycophenolate with no other medications at this time.

    His lung function has returned to almost normal. He has resumed his activities, which includes playing tennis about 3-4 days a week and working out with a trainer for two days a week. The rheumatologists are amazed with this quick recovery and the pulmonary doctor with his lung function. They comment that he wouldn't be doing as well as he has been if he had a typical case of myositis. His antibody testing was negative. They have mentioned that maybe his case could have been an "acute" attack towards his lungs. My questions are: Are there such cases that are "acute" situations? Is there additional testing we could do to determine whether he actually has ILD or myositis?

    Dr. Chinoy:

    I’m afraid it’s difficult to comment on a case like this without knowing the exact details. The important thing is that your son is a lot better now!

  • New Guidelines and Diagnosis

    Participant:

    Can you talk about how these new guidelines will affect how myositis is diagnosed?

    Dr. Chinoy:

    They shouldn’t do. They are not really supposed to be a substitute for clinical acumen.

  • Misdiagnosis?

    Participant:

    I was first diagnosed with polymyositis in 2011 and then in 2012 rediagnosed, after a third biopsy, with IBM. I have all the classic symptoms of other IBM patients with one exception. I had a mother who although would never go to a doctor, had the same symptoms as me and an older sister who was diagnosed with polymyositis. I also have an older brother who is not affected at all. My mother and sister are deceased. Dr. Shin Oh, who diagnosed, me always referred to my illness as familial IBM. He has since retired, and I have had to find a new physician. Have you ever heard of any other patients with IBM that have close family members with the same illness? At support meetings for myositis, no one else seems to have other family members with the same illness. Is my situation extremely rare or could I have been misdiagnosed?

    Dr. Chinoy:

    You could have a genetic myopathy which should be investigated accordingly. You should make your physician aware of the family history.

TMA:

This concludes today's discussion. Dr. Hector Chinoy, it has been a pleasure having you join us to answer TMA member questions. Thank you to all the members who participated, and we apologize for the delay.

Dr. Chinoy:

Thanks for having me!