Myositis medications and treatments, Perry Shieh, MD, PhD

This is a session at the Myositis Association's 2019 Annual Patient Conference in Minneapolis, led by a UCLA neurologist. You might have more choice than you think in your treatment regimen. Dr. Shieh reviews the available medications, their side effects, and some questions to ask your doctor when determining which treatment might be best for you.

[@Lost-In-Blank]

Is there a list of the currently recommended autoantibodies to be tested for on the TMA website?

[@yvettekopp2450]

I worry about prednisone and steroids. I refuse them because I have had MANY outbreaks of herpes in my left eye. I only have 2mm of cornea that isn't scared and it is over my pupil. Because I have 2mm of unscared cornea I am able to wear a specialized scleral lens called "Eyeprint Lens". I am 57 and I cataracts. I can't drive at night and I have not found a specialist willing to remove the cataracts. I feel like a train wreck.

[@natalienoble2021]

Anyone know anything about ku antibodies

[@yvettekopp2450]

How do you treat the extreme fatigue? I know that I have lupus, sjogrens, low wbc, and low IgG 2 and low IgG 4. I was treated with Gamunex C for one year and was denied the following years. I was on plaquenil which helped tremendously with cystitis. I was referred by my dermatologist to a dermatologist who specializes in mixed connective tissue disease and dermatomyositis. I deal with multiple symptoms but the fatigue is number one.

[@jeanettekerzic-qj3gq]

What is the answer to your question? I'd like to know.
Tu
Jeanette

[@Lost-In-Blank]

Q1: Are cases where the testing reveals no positive autoantibody test result, is that because:
a. There is no autoantibody involved in the disease?
b. The test result is a false negative (an incorrect negative result for any reason)?
c. We do not yet know of, or do not yet have a test for, the autoantibody concerned?
Q2: If no positive antibody test result, should a re-testing be ordered?
Q3: If no positive autoantibody test result, should testing be done a couple of years later for newly discovered autoantibodies?

[@Lost-In-Blank]

Q1: The less than a $1,000 price, in USD of course. How many autoantibodies would be tested for at that price?
Q2: What was the price for similar autoantibody tests 3 years ago.
In Canada, it is hard for anyone, including MDs, to know what anything costs.
I understand that, in my part of Canada, *a rheumatologist or neurologist must request an immunologist order autoantibody testing, due to the high cost and to reduce unnecessary expensive tests.* A myositis specialist here cannot, apparently, simply check off boxes and order the test done.
Possibly this extra roadblock is due to historically high costs, and possibly this extra roadblock should be reviewed because the extra effort by the myositis specialist and the immunologist now costs more than the tests do.

[@yvettekopp2450]

I totally understand. I have been bounced around to many specialists. Everyone finds something abnormal. I believe that my symptoms must be connected to one disorder. I wish you the best of luck.

[@profoundminds_9021]

Does anyone know a good doctor in Phoenix, Arizona for diagnosing and treating myositis? & will not put me further in debt

[@MyositisAssociation]

Email us at [e-mail] and we can send you some names of physicians in your area who are familiar with myositis.

[@profoundminds_9021]

I’ve had plenty of bad doctors that treat me like I’m just another patient on the list of patients for the day