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Antisynthetase Syndrome: Anyone else?

Autoimmune Diseases | Last Active: Jul 18, 2023 | Replies (63)

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@earlj52

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??

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Replies to "I was just looking for some information and support online for my husband's anti synthetase syndrome..."

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?

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.