← Return to Antisynthetase Syndrome: Anyone else?
DiscussionAntisynthetase Syndrome: Anyone else?
Autoimmune Diseases | Last Active: Sep 8 2:29pm | Replies (71)Comment receiving replies
Replies to "I was just looking for some information and support online for my husband's anti synthetase syndrome..."
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.
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?