Antisynthetase Syndrome: Anyone else?

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.

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?

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

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?

Hi Cantek,
Thanks for replying and sharing your story! Wow, you’ve been through a lot. Did your kidney stone pass?!
I didn’t know Cellcept could cause gastritis. Also, I didn’t know prednisone can cause muscle weakness. I gained 20 darn pounds in last 2 years, I think due to prednisone. I’m on 10 mg daily. I’ve been on that dose about a year. I’m glad your PFT’s are good! Those aren’t fun tests! I go again for another one and a CT scan in October. Before I had that slight increase this past March, I did ct scans about every 9 months to a year.
It sounds like you really take good care of yourself! I also adher to the Mediterranean diet. I do weights 3x a week, stationary bike and treadmill for total of 30 mins a day. Working on doing more. I recently finished pulmonary rehab and really enjoyed it!
I go to Cedars Sinai in Los Angeles.
It’s a daily struggle as you know. I pray everyday, say the rosary when I can and am thankful for what I can do. I just try to really appreciate the little things!
I’ll keep you in my prayers!
Keep in touch, hugs to you too!
Maria

Hi,
I was diagnosed with Antisynthetase Syndrome in 2019. It started out with a dry cough. I had X-ray that showed pneumonia. Then I followed up with a pulmonologist who did a CT scan and tons of blood work.
Ct showed scarring on lungs, blood work confirmed it was Antisynthetase. Shocking!
I’m on prednisone, Cellcept and Ofev. I go to Cedars Sinai in Los Angeles.
Where is your husband going?
It’s a difficult disease.
I don’t have muscle or skin problems.
Stay in touch and let me know if you have any questions, let me know. I’m here to help!

Wow Nancy,
He really went through it!
How is he now?
My lungs responded well to the Peednisone and Myfortis, the scarring is still there but I am praying for a complete healing!

Hello everyone ,
I was recently diagnosed with antisynthetase syndrome Aug 27th by rheumatologist in Salt Lake city UT. I started to have symptoms the end of 2019 mostly muscle ached and tried all the time, I knew something was wrong. I had completed blood work done and show to my primary he said not to worry. I thought the whole time maybe related to when I had sepsis in 2016. A year after GI doctor said my stomach lining was perfect never even thought I had sepsis a year earlier.
March 2021 not long after I got covid vaccine I start to have dry cough but wasn't bad enough to get on antibiotics. Since I have cervical radiculopathy both side of my neck I get therapy at my doctor a few times a week. The therapist she noticed my body is little warm and she also noticed my back where the lungs are very tight. I know when she touched there was so painful make the story short. I had CT scan done with contrast and without. I was able to find a good pulmonologist at that time west palm beach Florida. When I first saw him I was already on methylprednisolone 3 rounds and all kind of antibiotics. CT scan showed both of my lungs have hundred of Ground glass opacity and most of them were 5-8mm. The pulmonologist also ordered lung function tests but he told me oxygen will not help me because how my lungs open and close.
At that time I was not worried about myself because one of my youngest has major heart attacked and few months after his twins brother passed away from heart attacked.
I told the doctor to give me what they can so I can fly back home for my son funeral.
At that time I was staying with my parents during the visit and mother saw that I was struggled even just to say few word. She made me home remedies for cough (stuff we use in cooking)
Actually helped enough to get me through that week and get home.my pulmonologist ordered other CT scan and it was not he want to see. At that time I was on prednisone and Benzontate 200mg for coughing. I was starting to lose hope, my son told me that I need to be here for the grandkids and them not allow to die. I came across some journal of holistic doctor that finishing up her study about eastern medicine and lung disease. I took the formula and asked my old boss who taught pharmacy school just to make sure it safe. I did it for 2 months and my lungs are stable.
I know this post is long but I just wanted to share my journey and hope it will help someone. I am lucky to have good team of doctor who really care and help me. I been told that antisynthetase syndrome is easy to miss diagnosed. But I look back every medication I took was exactly what I need. At the moment I am on mycophenolate 500mg twice a day. This decease effects my other organs functions so I am on those medications as well. Myositis is hard because of the pain but I took muscle relaxer at night so I can sleep. I limit certain foods that cause inflammation but I still try to enjoy some sweet sometimes. I read all you guys story and really sorry that some of you has a hard time. I am 61 years old it is hard not be able to do certain things I use to do. But I am grateful that I am still here . To see my grandchildren grow up. This decease doesn't care who you are or where you came from. Thanks God for the technology that we are able to share our journey.
I appreciate your story and knowing you are not alone really help.

My husband got diagnosed this year

Hello @nivachi and welcome to Mayo Connect and to the discussion on Antisynthetase Syndrome. You mentioned in your post that your husband has been diagnosed with this rare autoimmune disorder. As this is a new diagnosis for him, would you like to share a bit about how the diagnosis came about? For example, what symptoms, led to his diagnosis?

I'm wondering, are you looking for information or just looking for support from others who also have this syndrome?