Antisynthetase Syndrome: Anyone else?

Posted by nancykay1888 @nancykay1888, Feb 12, 2020

My husband was diagnosed with this autoimmune syndrome in 2017 after spending 4-1/2 months in the hospital (59 in ICU). Normally it affects women with one in 100,000 people. It has affected his pulmonary system, muscles, blood, skin and you never know when something will pop up. He has wonderful doctors who watch him very carefully. Has anyone else ever encountered this syndrome or heard of anyone with it?

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jahsmoov | @jahsmoov | Jul 15 12:36pm

In reply to @simchaemuna2 "Hi I too have this Very Rare condition. Sorry ya’ll but I am happy you all..." + (show)

@simchaemuna2 yup, same here. You run into any complications from the steroid usage prescribed ?

jahsmoov | @jahsmoov | Jul 15 6:59pm

@nancykanancykay1888 what’s his age? And how is he currently doing? Seems like him and I had same kind of path in ICU. Was there about 30 days then MICU.

simchaemuna2 | @simchaemuna2 | Jul 15 7:01pm

In reply to @jahsmoov "@simchaemuna2 yup, same here. You run into any complications from the steroid usage prescribed ?" + (show)

@jahsmoov
Thanks for writing. I take 2 Cell
Cepts one morning one at night.
Before being changed to one I was taking two at night two in the morning......influsion every 6 months. Thank you for reaching out.....it really does help knowing others understand.

rbear | @rbear | Jul 17 7:09pm

In reply to @jahsmoov "I’m 26, was diagnosed in 2022 after being life flighted to hospital. They diagnosed I had..." + (show)

@jahsmoov I’ve recently found a community support group through the Myositis Association. I have dermatomyositis caused by Antisynthatase (PL7 Myo marker) I just registered for Myo Con in St Louis this fall. They also run local chapter support groups. Something to consider!

rbear | @rbear | Jul 19 6:32am

In reply to @simchaemuna2 "Hi I too have this Very Rare condition. Sorry ya’ll but I am happy you all..." + (show)

@simchaemuna2 I’ve recently found a community support group through the Myositis Association. I have dermatomyositis caused by Antisynthatase (PL7 Myo marker). I just registered for their annual Myositis Convention in St Louis this fall. Something to consider!