Antisynthetase Syndrome: Anyone else?

I was just looking for some information and support online for my husband's anti synthetase syndrome and found this group. Greetings, if anyone is here!!!!! The posts look pretty old. I hope you and your family members are doing well. My husband is 70 and got diagnosed recently with anti synthetase syndrome at the Mayo Clinic. He had a dry cough, lung fibrosis, and the mechanics hands. He also lost some weight. It took many months to get him seen by a lung doc because of Covid. Thank goodness, we have been OCD about mask wearing always and got vaccinated!!! He was on a combination of CellCept and prednisone. They tapered him off the prednisone and increased the CellCept. He was doing really well and we thought he was on his way but some symptoms have come back. I was wondering how long, if ever, did it take to get this under remission for you or your loved one??

Greetings @earlj52, Welcome to Connect. There are some older posts but there are quite a few active members like @cantek, @clairemclaughlin, @mariakathleen, @wdalyone, @wfwcooks and others who can share their experience with you.

Did your husbands doctor have any suggestions or thoughts on his symptoms returning recently?

Hi,
I was diagnosed with AntiSythetase Oct 2020 and have also been on Prednisone as well as Myfortis.
Two years later, I am now on 5 mg of prednisone and continue, of course, with the immuno suppressant my fortis. I have had some coughing recently, but I’m in North Central Florida and the pollen here is crazy.
I’m sure you’ve reached out to his rheumatologist and pulmonologist about the return of symptoms and they will probably order pulmonary function test would be my guess to see how his lungs are doing. I’ve determined that this is a two steps forward one step back process. My adrenal glands have decided to go on vacation so I am also being followed by an endocrinologist to get me off of prednisone. am also being followed by an endocrinologist to get me off of prednisone. I was very fortunate and that they caught this fairly early by accident when I went in for a CT scan of my abdomen for a kidney stone.
I have completely changed my diet to an anti-inflammatory or Mediterranean diet. I stopped most alcohol. I rarely have anything to drink because the alcohol is a highly inflammatory, so it takes more than the meds to get this information under control.
Take care and exercise, it does help but be sure not to overdo it.
Kim

Hello, I was diagnosed with antisynthetase syndrome in August 2022, but had dry cough and the symptoms of idiopathic pulmonary fibrosis in March 2021. Was also diagnosed with dermatomyositis by the rheumatologist in Nov or Dec 2021. According to studies it is very rare autoimmune disease and because of our genetic everyone symptoms will vary. The blood work should shown what antibody your husband carries, mine is PL-7. I attached the link from NORD so you can understand little more about the antisynthetase syndrome. Since this disease is so rare according to the study is about 50,000 people have it. Because I also born with beta thalassemia make things a little complicated.
https://rarediseases.org/rare-diseases/antisynthetase-syndrome/#:~:text=Antisynthetase%20syndrome%20is%20a%20rare,specific%20protein%20in%20the%20body.

Hi
So glad they were able to diagnose your husband. My husband was diagnosed with antisynthetase in February 2020. He is still on cell cept and just recently stopped prednisone. He also has done rituximab/rituxin every 6 months for the past 2 years. He is still on oxygen, but seems to be doing better. My husband was diagnosed at 45, and the doctors don’t know if he’ll ever completely get over it. Not sure if this helps, it is frustrating for sure and I hope you both get some answers.

Yes, I had both doses and 3 booster. In Europe someone said they think is could be a trigger of our autoimmune disease. But not enough studies yet. With my family the hospital told us we needed to get genetic testing done. Last year 2021, I lost my youngest of the twin from heart attacked he was 34 and his twin brother also had heart attacked but survived. My oldest son had double pneumonia and end up in icu and coma for 4 months. I had lungs fibrosis last year as well. I got 13 grandkids and really afraid for them. I am sure my family health issues are more genetic related and the genetic blood disorder. I figured the more I can find out will benefit my children and grandchildren.

Thank you for the welcome John! It's really good to connect with others who have experience with this rare disease and hear their stories.
We are waiting to hear back from the doctors. It seemed like his symptoms /disease were a little better with the prednisone.
Thank you to all the others who replied and attached information. He was positive for PL-12. It seems like there is a genetic component to auto immune disease. He has a brother who has an auto immune condition. So far, they are the only ones in their family.
I find it difficult right now to deal with him being immunosuppressed and so much illness going around. I am scared he is going to catch anything, so we wear our masks everywhere and around people.

Thank you for your kind reply and sharing your husband's experience. I am sorry that he has this disease. It's a bit scary these days, being immunosuppressed. Best of luck to you and your husband!!!

Hi @jamieray6812 , just following up with you to see how you're doing. My 34 year old daughter was also diagnosed with this and has 2 small children and works full time. Who did you make your appt with, and have you figured out a way to manage your symptoms? Please respond.

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.