Antisynthetase Syndrome: Anyone else?

Posted by nancykay1888 @nancykay1888, Feb 12, 2020

My husband was diagnosed with this autoimmune syndrome in 2017 after spending 4-1/2 months in the hospital (59 in ICU). Normally it affects women with one in 100,000 people. It has affected his pulmonary system, muscles, blood, skin and you never know when something will pop up. He has wonderful doctors who watch him very carefully. Has anyone else ever encountered this syndrome or heard of anyone with it?

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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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@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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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?

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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

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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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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.

REPLY
@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??

Jump to this post

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.

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@jamieray6812

Is there anyone here with or knows someone with antisynthetase syndrome that has been vaccinated

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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.

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@johnbishop

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?

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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.

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@wfwcooks

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.

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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!!!

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@jamieray6812

Hello I am 27 years old and I was diagnosed with antisynthetase syndrome in nov. 2019 I have been searching all over for answer and other with conditions like me. It has affects my lungs muscles and joints. Your right this condition normally affects woman and usually older woman. I was also diagnosed with other conditions also with is that my doctor has told me has never been reported in combination with jo-1+ people and told me to report to Mayo Clinic’s which is what has brought me here… I am young and trying to find answers in any way that I can, I would be willing to share things about myself and any info I have received to possibly be of some help to your husband and anyone else reading this with this condition and I’d love input from anyone else l… it’s so hard to find answers.

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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.

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