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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 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
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1 ReactionI 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…..
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3 Reactions@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?
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1 Reaction@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
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1 ReactionI 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.
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1 ReactionYou’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.