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Antisynthetase Syndrome: Anyone else?

Autoimmune Diseases | Last Active: Sep 8 2:29pm | Replies (71)
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@mariakathleen

Hi,
I was diagnosed with ASS Jan. 2019. Started with a dry cough and pneumonia. Urgent care did x Ray and said my lungs didn’t look good. Ended up with a great pulmonologist who did CT. Scan which showed scarring on both lungs. Many blood tests and one determined it was Antisynthetase Syndrome . As you know, a very rare disease, I’ve been on prednisone, Cellcept and Ofev for 3 1/2 years. A few months ago I also had Rituxan infusion because this past March my CT scan showed slight increase in scarring,
My thoughts are with you!
I have more to share if you have questions.

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Replies to "Hi, I was diagnosed with ASS Jan. 2019. Started with a dry cough and pneumonia. Urgent..."
John, Volunteer Mentor | @johnbishop | Aug 13, 2022

Hi @mariakathleen, Welcome to Connect. Thank you for sharing your experience with Antisynthetase Syndrome and the willingness to help other members struggling with the rare condition. I'm wondering if @cantek, @nancykay1888, @tstefanelli, @jamieray6812, @allie7764 and @wfwcooks may have some questions about your experience with ASS.

Do you have any questions for others with Antisynthetase Syndrome?

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clairemclaughlin | @clairemclaughlin | Aug 15, 2022

Hello ,I have IPF.I have very similar symptoms. I was finally diagnosed in April of this year. I am also taking Ofev. I have had a few issues with side effects. I don't know about Rituxan Infusion , I am being followed at the Mayo Clinic In Jacksonville Fla. I will keep you posted. Hugs Claire

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cantek | @cantek | Aug 15, 2022

Hi Maria,
I was diagnosed 2 years ago after an CT for a kidney stone found the fibrosis in my lungs!
I was very lucky they caught it early and so far I’m stable but no follow up CT has been done ( my PFT,s are good) so maybe that is why?
I’m on Myfortis ( Cellcept caused acute gastritis) and am trying to wean off Prednisone which is not easy I am finding!
What a life changer though! Had to stop working, diagnosed at beginning of pandemic, and been in PT for muscle wasting from Prednisone.
It is definitely a one day at a time diagnosis, I also have Sjogrens.
My focus is self care, Mediterranean diet, exercise, cold pool for inflammation, progressive relaxation and practice of gratitude.
What do you do to take care?

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