1. < Autoimmune Diseases

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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Becky, Volunteer Mentor | @becsbuddy | May 10, 2023
In reply to @kendrakh "I was diagnosed w ASS in April of 2020. In June of 2022 I was diagnosed..." + (show)
@kendrakh

I was diagnosed w ASS in April of 2020. In June of 2022 I was diagnosed with ASS related ILD. Every treatment I've tried I end up having a reaction to. I would love to be able to get into the Mayo Clinic hoping more is known about this rare disease.

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@kendrakh It must be so difficult to react badly to every treatment. I understand your desire to go to Mayo Clinic, unfortunately, it’ not always possible. Mayo does have a network of hospitals around the country, called the Mayo Clinic Care Network. The link is:
https://mayoclinic.org/about-mayo-clinic/care-network/members. These hospitals have access to all the knowledge that Mayo Clinic.
Can you try to contact this group and then let me know what you learn?

REPLY
kendrakh | @kendrakh | May 16, 2023
In reply to @wfwcooks "I have read thru some of the posts. My husband was diagnosed with interstitial lung disease..." + (show)
@wfwcooks

I have read thru some of the posts. My husband was diagnosed with interstitial lung disease after being in ICU for two months. Later we found out he has anti-synthetase syndrome. He has been on prednisone, antibiotics, CellCept since February 2021. He has been doing Rituxan infusion every six months. He’s had some improvement Not enough to get off oxygen or go back to work. I am curious to know if anyone out here has had interstitial lung disease and antisynthetase syndrome on oxygen and then able to get off oxygen and recover. He was 46 years old when diagnosed.

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I have both ASS and ILD. So far I'm lucky enough to not be on oxygen. I have several through my FB ASS group that have been able too.

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Christine | @thisoldewe | Jul 18, 2023

Thank you all for your discussion on this rare disorder. As you will see in my profile, I am a bag of auto-immune and inflammatory problems. On reading your posts, I remembered about 6 years ago, I was found to have this Jo-1, but moved to a different province shortly thereafter. Perhaps, this bit of info has not been passed along. Tomorrow, I have a appointment with my respirologist, and will ask about this.
I will report back if there if anything to report.

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