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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@allie7764

Hello,

I am 30 years old and was diagnosed with anti-synthetase syndrome when I was 25 in 2016 at Mayo Clinic. I have autoimmune problems on both sides of my family, although nobody in my immediate family, and no diseases this rare. Mine affected my lungs, muscles, joints, etc. My joints were what really bothered me at first before being diagnosed, but my muscle and joint involvement have improved since I started prednisone and immunosuppressants. My lungs have been the main issue that we've had to keep a close eye on. And as you said, @nancykay1888, random things just seem to always be popping up.

I was first taking azathioprine and prednisone, but the azathioprine basically shut down my bone marrow right away, and my body stopped making blood. I needed 4 blood transfusions and spent a couple weeks in the hospital. After spending a couple years on just relatively high-dose steroids, doctors finally added mycophenolate about a year ago, and I was slowly able to taper down to just 3mg of prednisone and was feeling pretty good, for the most part. Throughout the last five years, my lungs have continued to show inflammation on CT scans and pulmonary function tests show a mild decrease in lung function, but any flares were caught pretty early and have been mild until my last episode.

Last month, on June 1, 2021, I went to the ER in my hometown in ND due to not being able to breathe, and later that night I also started coughing up blood. Long story short, they spent a few days treating me for pneumonia, which I did not have, and I was eventually intubated and my hospital could not stabilize me. (My doctors here have little to no knowledge of anti-synthetase and it has been frustrating any time I need care in the ER/hospital here!) They eventually did a scope of my lungs and found that my lungs were almost completely filled with blood, which is when they finally figured it wasn't pneumonia, called my doctors at Mayo, and got me stabilized after following the direction of Mayo Clinic. (My mom had been asking them to contact Mayo for days while my condition worsened.) Mayo sent their jet to come get me and transfer me to their ICU in Rochester.

They woke me up a few days later and those "miracle workers" saved my life. I went from being intubated in a medically-induced coma, to being completely reliant on bi-pap oxygen masks, to being on a few liters of oxygen through a regular nasal cannula within about 10 days. I am still on the few liters of oxygen, but I have been able to heal at home for the last four weeks. Doctors are now trying to figure out if this was a rare occurrence due to my interstitial lung disease/anti-synthetase syndrome, or if a whole separate autoimmune disease (ANCA vasculitis) is to blame for the hemorrhaging in my lungs. We are also not sure yet whether this last episode made any scarring/fibrosis in my lungs or caused any permanent damage. I head back to Mayo in a little over a week for more out-patient appointments and tests, and hopefully answers.

It definitely feels like this disease is constantly throwing up new obstacles and it has been scary, especially with lung disease during Covid. Sorry this was a long post. I could go on about how frustrating it has been at times, but also how amazing the doctors and nurses at Mayo have been throughout this whole journey. I hope the others who have posted about yourself or loved ones are doing well today, along with anyone else who may just be reading these posts. It helps to read about others who are also fighting this rare, strange disease.

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I just read your response to something I posted on here a while back and I’m just so sorry you have to deal with all your dealing with, I was diagnosed almost 2 years ago and I’m terrified of life, I have been searching for a new dr. Someone who really understands this disease because like you said no one really knows much about it, every dr I see I ask if they have ever heard of it and they say no… how did you get into Mayo Clinic, and if you don’t mind me asking… did you get the covid vaccine… I’m terrified to get it because this disease is so rare and no one know how our body will react to it but I don’t know if I’m wrong for not getting it… and it’s hard to find anyone to ask questions… your a warrior and I hope nothing but the best for you thank you so much for sharing your story ❤️

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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 have been diagnosed and have been vaccinated.

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@jamieray6812

I just read your response to something I posted on here a while back and I’m just so sorry you have to deal with all your dealing with, I was diagnosed almost 2 years ago and I’m terrified of life, I have been searching for a new dr. Someone who really understands this disease because like you said no one really knows much about it, every dr I see I ask if they have ever heard of it and they say no… how did you get into Mayo Clinic, and if you don’t mind me asking… did you get the covid vaccine… I’m terrified to get it because this disease is so rare and no one know how our body will react to it but I don’t know if I’m wrong for not getting it… and it’s hard to find anyone to ask questions… your a warrior and I hope nothing but the best for you thank you so much for sharing your story ❤️

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@jamieray6812 I’m so sorry that I didn’t see your posting earlier. I agree, it is so difficult to find a doctor who understands autoimmune diseases or who has even heard of them. I recently found this article that may be helpful.
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
You said that you have been to Mayo Clinic—when was that? Are you starting to look for a new doctor?
My autoimmune disease came on pretty quickly and my husband had to do all the research because i was pretty out-of-it.
I also found this website that talks about antisynthetase syndrome:
https://rarediseases.info.nih.gov/diseases/735/antisynthetase-syndrome
When i was first sick, my brother-in-law sent me all this type of information. I read it and took it to doctor visits!
Good luck and let me know what you learn

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@johnbishop

Hello @jamieray6812, I know it must really be difficult trying to find answers when you have such a rare disorder like antisynthetase syndrome. Along with the reference link above for the condition on the National Organization for Rare Disorders website, The Myositis Association website has information that you might find helpful.

– Antisynthetase Syndrome: https://www.myositis.org/about-myositis/complications/antisynthetase-syndrome/

If I understood your post, your doctors mentioned going to Mayo Clinic after you were diagnosed with antisynthetase syndrome. Have you setup an appointment with Mayo?

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Thank you, I have not set up a appointment… I did call and try but they told me they didn’t take my insurance

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@jamieray6812

Thank you, I have not set up a appointment… I did call and try but they told me they didn’t take my insurance

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I went to another large hospital as Mayo Clinic is too far from my home. The doctor I saw there was highly knowledgeable and has made many videos discussing this rare disease. Love him and thrilled I found him.

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@cbozzolo28

I went to another large hospital as Mayo Clinic is too far from my home. The doctor I saw there was highly knowledgeable and has made many videos discussing this rare disease. Love him and thrilled I found him.

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That's great news @jamieray6812! I hope you will keep us updated with your treatment and progress.

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I have read thru some of the posts. My husband was diagnosed with interstitial lung disease after being in ICU for two months. Later we found out he has anti-synthetase syndrome. He has been on prednisone, antibiotics, CellCept since February 2021. He has been doing Rituxan infusion every six months. He’s had some improvement Not enough to get off oxygen or go back to work. I am curious to know if anyone out here has had interstitial lung disease and antisynthetase syndrome on oxygen and then able to get off oxygen and recover. He was 46 years old when diagnosed.

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@wfwcooks

I have read thru some of the posts. My husband was diagnosed with interstitial lung disease after being in ICU for two months. Later we found out he has anti-synthetase syndrome. He has been on prednisone, antibiotics, CellCept since February 2021. He has been doing Rituxan infusion every six months. He’s had some improvement Not enough to get off oxygen or go back to work. I am curious to know if anyone out here has had interstitial lung disease and antisynthetase syndrome on oxygen and then able to get off oxygen and recover. He was 46 years old when diagnosed.

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Welcome @wfwcooks. I moved your question to this existing discussion about antisynthetase syndrome:
– Antisynthetase Syndrome: Anyone else? https://connect.mayoclinic.org/discussion/anti-synthetase-syndrome/

I did this so you can connect with others like @nancykay1888 @jamieray6812 @tstefanelli @allie7764 @cbozzolo28 who can share their experiences with you and respond to your question about if anyone has been able to successfully get off oxygen and recover.

Does he use oxygen all the time?

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@colleenyoung

Welcome @wfwcooks. I moved your question to this existing discussion about antisynthetase syndrome:
– Antisynthetase Syndrome: Anyone else? https://connect.mayoclinic.org/discussion/anti-synthetase-syndrome/

I did this so you can connect with others like @nancykay1888 @jamieray6812 @tstefanelli @allie7764 @cbozzolo28 who can share their experiences with you and respond to your question about if anyone has been able to successfully get off oxygen and recover.

Does he use oxygen all the time?

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Thanks! He is on full time oxygen.

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@wfwcooks

Thanks! He is on full time oxygen.

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I’m not on oxygen, but I am on a support group on FB that is fabulous. They do not give medical advise. They only tell you their experience. I think they are wonderful. They would tell u if they had gotten off oxygen. Look into it.

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