Antisynthetase Syndrome: Anyone else?

I had to stop Cellcept. I had to stop it because it caused anemia, I realized the difficult breathing and major weakness went away, so symptoms were from the drug, not the syndrome Now just on prednisone which I’m tapering off this week. Worried a little bit not to be on any meds, however glad to be free of them.
Wish you well.. keep me posted

I was diagnosed with Antisynthetase in December 2024. It has impacted my muscles and lungs. I am on an immune suppressant medication and working on getting stronger by walking and doing light strength exercise. Some days I feel overwhelmed and frustrated not knowing what to expect. My life is not the same….taking the immune suppressant medication I am concerned about being around people and catching something that my immune system will not be able to fight off. Also, the medication Mycophenolate can cause melanoma which I had on my arm in 2017. I feel so restricted on many levels which is so frustrating…..

@mommarsh
How long were you on cellcept before going on prednisone? How long on prednisone before going off all meds? How have you been since no medication? How did your doctor determine remission?

@devineblessing
I totally understand how you feel…totally! I think the worst pain is not knowing how to plan your day. I am a wife, mother and grandmother... so many plans I had. Now I got that off my chest I wanted you to know you are not alone. I for one will try to remember you as I go out my day. It does feel better knowing you are NOT alone. Any support you may think I can help with please don’t hesitate to reach out

I thought you might want to know that I am on Cell Cept. ..also I have an infusion about every six months. I also have ILD I am blessed to have family support and great doctors. I sure hope that this info is encouraging.

You’re not alone! I’m a 43 male and was diagnosed with Antisynthatase with a PL7 myo marker in August of this year. Was discovered due to shortness breath and developing pneumonia. Also developed “mechanic hands”. I’ve been on prednisone and cell cept for about 3.5 months now which has improved my oxygen levels and my hands but I’m still not back to normal. So far I’m tolerating the drugs but it’s still kind of early. I have my next CT and PFT and round of labs in a week to check on any changes. I’m optimistic, but The hardest part about all this is not knowing what to expect and also being paranoid about getting sick now that I’m immune compromised. The good new is, for now, I seem to be able to live a relatively normal life.

I’m 26, was diagnosed in 2022 after being life flighted to hospital. They diagnosed I had ILD, Polymyositis as well. Was sedated, intubated, on echmo and ventilator. Had a great team of doctors and Rheumatologist at Mass General in Boston. Left the hospital after 2.5 months for about a month of Rehab. Currently still taking a Rituxmab infusion every 3 months as well as Tacrolimus for main medications. Was just diagnosed with Avascular Necrosis of my left hip due to the heavy dosage of steroids while in the hospital. Anyone else run into necrosis due to steroid usage?

@jamieray6812 I’m 26, male. Was diagnosed in 2020

Hi I too have this Very Rare condition. Sorry ya’ll but I am happy you all are here. I have ILD and taking infusions every six months Because I am small. I don’t have some of the options some of you have..I weigh 86 pounds. I do take Cell Cept 2 daily (morning and night. Please stay in touch, this is a lonely disease. Any questions you might need to talk about please ask. If nothing else I will keep us all in prayer

2022*