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Antisynthetase Syndrome: Anyone else?
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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@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?
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1 ReactionI 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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1 ReactionThank 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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1 ReactionThis thread is silent for a while but still posting as I came to know about it recently. I'm 45 male, diagnosed with Antisynthetase Syndrome involving ILD, inflammatory arthritis and myositis. Spent 2+ months in hospital and it look long to get the diagnosis. Would like to connect to the group.
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1 ReactionWelcome @sach24, I'm glad that you found the discussion. While you wait for other members diagnosed with Antisynthetase Syndrome to respond you might want to look through the other discussions and comments made by members on the condition. Here is a link to the discussions and comments - https://connect.mayoclinic.org/search/?search=Antisynthetase+Syndrome
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1 ReactionHi Nancy, I know your post is old. I was just diagnosed with ASS with ILD, positive Anti JO 1.
Currently on Prednisone and CellCept, will be starting Rituxan soon. Hoping for some symptom change soon. How is your husband doing now?
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2 ReactionsWelcome @breas, I'm not sure Nancy @nancykay1888 is still following Connect but @wfwcooks and @cantek have Antisynthetase Syndrome in another discussion below and may have some encouragement to share with you on treatments.
-- What does remission look like for antisynthetase syndrome?
https://connect.mayoclinic.org/discussion/antisynthetase-remission/
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1 ReactionThanks so much!
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2 ReactionsHi John and @breas ,
I too am diagnosed with Antisynthetase/ ILD and Myositis.
I am under the care of Dr. Pais the head of UF’s Myositis / ILD Dept.
I failed all oral meds ( GI side effects) and am currently receiving IV Rituximab every six months and doing well.
If I can help in any way let me know.
Kim
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4 ReactionsHey Kim,
I am glad you tear you are doing well! I am currently on Steroids and CellCept and have had some relief. My joint pain and shortness of breath is still a concern. I am getting my first infusion of Rituximab in two weeks, another two weeks after and then every 6 months. I am really hoping this is going to get me back to semi-normal. I too have GI issues, I have been hopitalized with 6 blockages in my smal intestine over the last four years. The only good news is that helped me get to the real diagnois I had been searching for. 🙂
Any advice for my first infusion coming up?