1. < Autoimmune Diseases

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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wfwcooks | @wfwcooks | Mar 1, 2022

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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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 1, 2022
In reply to @wfwcooks "I have read thru some of the posts. My husband was diagnosed with interstitial lung disease..." + (show)
@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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1 reply
wfwcooks | @wfwcooks | Mar 1, 2022
In reply to @colleenyoung "Welcome @wfwcooks. I moved your question to this existing discussion about antisynthetase syndrome: - Antisynthetase Syndrome:..." + (show)
@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?

Jump to this post

Thanks! He is on full time oxygen.

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1 reply
cbozzolo28 | @cbozzolo28 | Mar 3, 2022
In reply to @wfwcooks "Thanks! He is on full time oxygen." + (show)
@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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cantek | @cantek | May 18, 2022

Hi Nancy!
I was diagnosed with a syndrome back in November 2020. It has affected my lungs and skin. Fortunately it was caught by accident during a CT scan of my abdomen they saw the scarring on my lungs! I’ve been on Myfortis and Prednisone ( lovely side effects).
I have failed weaning off of the prednisone twice now with a reoccurrence of the rash which is consistent with a flare of the autoimmune disease. How is your husband doing?

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1 reply
cantek | @cantek | May 18, 2022
In reply to @jamieray6812 "I just read your response to something I posted on here a while back and I’m..." + (show)
@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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Wow Jamie!
You have been through it!
I was diagnosed with AntiSynthetase syndrome in November 20 20. Lung and skin involvement.
I have had three Covid vaccines and one booster. Don’t hesitate to get that vaccine, I caught Covid after two vaccines and I swear it save my life. I had to stop my immunosuppressants ( Myfortis) to fight the Covid. Don’t think I would’ve made it if I hadn’t happened back to it.

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Mentor
John, Volunteer Mentor | @johnbishop | May 19, 2022
In reply to @cantek "Hi Nancy! I was diagnosed with a syndrome back in November 2020. It has affected my..." + (show)
@cantek

Hi Nancy!
I was diagnosed with a syndrome back in November 2020. It has affected my lungs and skin. Fortunately it was caught by accident during a CT scan of my abdomen they saw the scarring on my lungs! I’ve been on Myfortis and Prednisone ( lovely side effects).
I have failed weaning off of the prednisone twice now with a reoccurrence of the rash which is consistent with a flare of the autoimmune disease. How is your husband doing?

Jump to this post

Welcome @cantek, Tapering off of prednisone can be difficult. I've done it twice for another condition, PMR which is now in remission. What helped me was going very slowly and small increments. My rheumatologist gave me scripts for 2.5 mg and 1 mg tablets which helped me reduce the daily amounts as my symptoms allowed. The key was listening to my body. If I hurt too bad, I didn't taper or reduced it by a smaller amount.

Did your doctor give you any tapering instructions or schedule suggestions?

REPLY
1 reply
cantek | @cantek | May 19, 2022
In reply to @johnbishop "Welcome @cantek, Tapering off of prednisone can be difficult. I've done it twice for another condition,..." + (show)
@johnbishop

Welcome @cantek, Tapering off of prednisone can be difficult. I've done it twice for another condition, PMR which is now in remission. What helped me was going very slowly and small increments. My rheumatologist gave me scripts for 2.5 mg and 1 mg tablets which helped me reduce the daily amounts as my symptoms allowed. The key was listening to my body. If I hurt too bad, I didn't taper or reduced it by a smaller amount.

Did your doctor give you any tapering instructions or schedule suggestions?

Jump to this post

I went down 1/2 mg/ week and when I got to 3 1/2 I became symptomatic with fatigue and nausea. Thought it was withdrawl symptoms but it was the ASS resurging!
The prednisone withdrawl and flare symptoms are so alike!

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 19, 2022
In reply to @cantek "I went down 1/2 mg/ week and when I got to 3 1/2 I became symptomatic..." + (show)
@cantek

I went down 1/2 mg/ week and when I got to 3 1/2 I became symptomatic with fatigue and nausea. Thought it was withdrawl symptoms but it was the ASS resurging!
The prednisone withdrawl and flare symptoms are so alike!

Jump to this post

The last 6 months of my first round with PMR was going back and forth between 1 and 1/2 mgs of prednisone until I could finally stop taking it with only a minor ache waking up which went away after I started moving around.

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