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nancykay1888 (@nancykay1888)

Antisynthetase Syndrome: Anyone else?

Autoimmune Diseases | Last Active: May 16 11:48am | Replies (62)

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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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Replies to "Hello, I am 30 years old and was diagnosed with anti-synthetase syndrome when I was 25..."

Hello @allie7764, Welcome to Connect and thank you for sharing the details of your journey with this rare disease. Like you mentioned, it really does help others to read these posts and know that they are not alone when battling these types of conditions. I know it can be scary when there is so much that is not known. You mentioned that you are heading back to Mayo in a week or so for more appointments, tests and hopefully answers.

There is a site with some tools to help you plan your conversation with your doctors and care team that seems like it might be helpful for you and others – https://patientrevolution.org/visit-tools

Do you mind sharing what questions you would like to get answered?

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 ❤️