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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 am 66 yr man. Diagnosed with AS & IBM- (Inclusion Body Myositis)- both muscle related . Am retired from a physical & office type job. In wheelchair. Also take celcept. Does anyone else have same type condition? Any walking issues? My doctor in Boston - Mass General Brighams, said it is rare to see both together- AS & IBM.
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2 ReactionsI can’t speak to a medical definition of remission, but for me, it means that I am not experiencing daily issues from my condition. With the exception of one small flare up, my skin has been clear of the fissures and cracked skin since 2-3 months post my first rituximab infusion. My joints, primarily hands and wrists, have gone from an 8 or 10 out of 10 on the pain and swelling scale to a 1 or 2 at most. Most importantly, my ILD, which was mild when diagnosed (I had NO shortness of breath at all and was shocked to find that I had ILD) was arrested. I have not experienced any progression.
I hope that this explanation helps and that you a receiving proper care.
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2 ReactionsThank you for sharing! It helped me greatly. I feel you have given me some guide posts which I didn’t have. This is all so new. My hopes for you as well as everyone here is that wellness is a great part of all of our lives. I am feeling so much better than I felt a few days ago. Knowing I not alone in this has been so encouraging. Thank you all
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1 ReactionI have antisynthetase syndrome and ILD. I’ve had the Rituxan infusion about a month ago. I was told it takes about 3 months to see any improvement from it.
I didn’t have any side effects from it. Takes several hours for the infusion. It’s done in two parts, a few weeks apart.
I bring something to do & lunch and snacks.
I’m sorry that you’re suffering with these conditions. Apparently, muscle involvement in ASS (great acronym, no 😋?) is pretty common. From what I gather my presentation is quite uncommon—absolutely no muscle involvement and first symptom was Polyarthralgia.
My experience in treatment is that the docs go after the “life threatening” first and then worry about the “quality of life” issues next. For me that meant going off Humira (which did a perfect job with my joints) but left my lungs exposed. Rituximab has worked exquisitely with my lungs and skin and well with my joints. I have opted out of any other meds (such as methotrexate or cell cept) that might help joints further. For me, I feel great where I am at and did not want other side effects or potentially additional fatigue.
Are you taking anything besides cellcept? Did the ASS/IBM relegate you to a wheelchair or were you in one prior? Have you asked your providers what other medication options you have to get additional relief and what trade offs might be needed?
Lastly, do you know which autoantibody you tested positive for with your ASS diagnosis? Different ones have very different manifestations for the condition, and potentially different treatment profiles.