Antisynthetase Syndrome: Anyone else?
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 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 ❤️
Yes, I have been diagnosed and have been vaccinated.
@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
Thank you, I have not set up a appointment… I did call and try but they told me they didn’t take my insurance
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.
That's great news @jamieray6812! I hope you will keep us updated with your treatment and progress.
Will do!
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.
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?
Thanks! He is on full time oxygen.
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.