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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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cantek | @cantek | Sep 8, 2024

I got very nauseas and dizzy.
I use medical marajuana for sleep ( indica) and myalgia( CBD).
I will premedicate with a small amount of indica before the next round in December and take a family member with me.
They premedicate with benadryl iv and zofran but it didn't cover the nausea.
My MD dc’d the oral immunosuppressant after starting rituximab and my bowel is back to normal now!
REPLY
gogo2 | @gogo2 | Dec 22, 2024
In reply to @cantek "Hi John and @breas , I too am diagnosed with Antisynthetase/ ILD and Myositis. I am..." + (show)
@cantek

Hi John and @breas ,
I too am diagnosed with Antisynthetase/ ILD and Myositis.
I am under the care of Dr. Pais the head of UF’s Myositis / ILD Dept.
I failed all oral meds ( GI side effects) and am currently receiving IV Rituximab every six months and doing well.
If I can help in any way let me know.
Kim

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My husband has ass pl-12 antibody interstitial lung disease polymyositis anybody with this particular antibody

REPLY
gogo2 | @gogo2 | Dec 22, 2024

My husband was diagnosed with polymyositis antisynthetase Pl-12 antibody interstitial lung disease after 2 hospitalizations of pneumonia 4 months apart he has been on high dose of Prednisone high dose cellcept and now on tacrolmus waiting for Rituximab infusions to start anyone with this particular antibody and anyone that has had Rituxima. Infusion ?

REPLY
gogo2 | @gogo2 | Dec 22, 2024
In reply to @earlj52 "Thank you for the welcome John! It's really good to connect with others who have experience..." + (show)
@earlj52

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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My husband also has pl-12 antisythetase polymiositis interstitial lung disease what treatments has your husband had and how is he doing now ?

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