Antisynthetase or myositis support groups?

Happy to connect. I am being treated for antisynthetase syndrome since Feb. 2025. There is a myositis.org that has support groups too.

Greetings! just diagnosed with this on Monday. Would like to connect with others specifically about this…FB has a couple of support groups , too. I am on prednisone 40 mg….my lungs have been rough since October (first organizing pneumonia, then a PE in late November),,,,,,plan is to add cellcept down the road. My doc first said Sjogrens,,,,then found buried (he said hard to find)
The ASyS antibody results which fit me exactly.
Are those on this list with this, mostly post covid triggered?

Penny in Wisconsin

Hi- i have been on Cell cept for a little over a year. It has stabilized my lungs and skin. However, myositis not great. Symptoms started October, 2024 (post covid, but I never contracted covid). I also started on prednisone, but, scaled up Cell cept, while scaling down prednisone.

@cohera hello, thanks for the reply. I hope you are doing well. My doctors first suspected lupus, and sjogrens as well, then autoimmune hepatitis, then they ruled everything out and told me to talk to my endocrinologist because my thyroid levels were fluctuating from 0.01 to 12.0 within a month. I got frustrated and insisted on a referral to Mayo. Thank goodness I did! My rheumatologist immediately pointed to myositis. I don’t have ILD but I think I was diagnosed really early. Fingers crossed it doesn’t develop. I do have persistent cough. I’ve been wondering about post covid… I’m going to see the aerospace program and I was told to ask them. I had Covid 4-5 times. I did have lots of stress in my life right before it manifested. So, who knows. This whole thing is a full time mystery,

@elisaonthego hello, thank you for replying. What markers do you have? I was diagnosed around the same time. I live in the Midwest so I think the weather has been taking a toll on me this year. Is yours weather sensitive? It could be fibromyalgia but I’m not sure.

Hi - I have PL12 and Ro52. I have autoimmune markers. I live in Arizona, originally from Chicgo area, but have not lived there for some time. I don't feel weather sensitive, but, hard to avoid the sun here. Cell cept is working for lungs (main concern), myositis still an issue.

@stacylynnb
Are you with a Mayo Rheumatologist? If so, where and who? I have a Mayo consult in May in Phoenix.

@stacylynnb
Forgot to mention, ILD wasn't confirmed until my HDCT. I suggest you get that done. I did have bad cough and shortness of breath. I also get regular PFTs. Cell cept did stabilize lungs.

@elisaonthego I was with dr young. Who are you seeing?

Dr. Nagaraja. My pulmonologist at Mayo referred me. Was Dr. Young helpful?