Antisynthetase Syndrome: Anyone else?

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!

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

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 ?

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

I am a 59 year old male I was diagnosed with antisynthetase syndrome a year and a half ago and I’m looking for others with this to talk to ad it’s so rare and even my doctors can’t answer my questions about what I’m going through I have gone from working and very active to living day by day please reach out

Hi, @gefsj2015,

Welcome to Mayo Clinic Connect. I'm sorry to hear of your diagnosis and how your life has changed because of it. I do not have this condition, but if you type the words antisynthetase syndrome into the search box at the top of the page, it will bring up several threads that you can access regarding this condition. And you'll find on those threads other Connect members who have and are knowledgeable about the condition and can share their experiences with you. Hope that helps. All the best to you.

I have been diagnosed with this as well as ILD. No cure, just treatment.
High doses of steroids. Was taking Cellcept, had to stop. They will introduce with a lower dose.
Had an infusion, which they say will take about 3 months to see any benefits.
And improvement will take a long time to see, unfortunately.
Some days I feel better, not great. If he has pulmonary issues, have him try Pulmonary Therapy. If not, find a physical therapist that is familiar with this.

I have had the infusion in January. I was told you won’t see any improvement for at least 3 months.
Any improvement with this disease is slow. See my post below for additional comments.

I just found out 7 months ago. I was told it is a very rare disease. I grateful to know that there are others like me who do understand the up side downs of this disease. PS it took 1/1.5 to find out what was wrong.

This is almost too good to be true. I was feeling alone in this battle with this disease. Please count me in on sharing my life dealing with this. I am a 75 year old woman…have other health issues.