Antisynthetase Syndrome: Anyone else?

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.

I 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.

Thank 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

I 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.

How long before you were in remission? I have ILD and recently have much improved. My issue is fatigue and weakness and heaviness in my legs. Side effects from steroids is most annoying.

I can’t remember if I mentioned in my initial post that I had a somewhat unusual presentation of ASS. I don’t have any muscle involvement—never did. Even my bloodwork has never shown elevated levels of inflammation. My main symptoms were extreme joint pain and swelling (I couldn’t raise my arms to wash my hair) mechanics hands (cracks and fissures covering most digits), cracked, bleeding skin on elbows and knees, patches on arms extending from elbow towards my hands, Raynauds, fatigue and asymptomatic ILD. I was shocked when I was told that I had ILD. I had been misdiagnosed for years and was being treated with Humira for sero-negative rheumatoid arthritis. The humira had gotten my joints under control but, nothing else. Repeated courses of steroids did nothing for my joints or skin.

Fast forward, finally properly diagnosed and Rituximab prescribed (and approved by the insurance company). I had 2 infusions 2 weeks apart (and now follow that protocol every 6 months, now having had 4 sets of infusions). About 8 -10 weeks later I began to notice significant improvement in my skin (which is largely clear now). My joints had been ok when I began rituximab from having been on Humira. Humira was more effective on my joints than rituximab, but, the rituximab has arrested the progression of my ILD. My fatigue has never been awful but it has improved. I’ve always been super high energy and attributed fatigue to aging, which was not accurate. Bottom line, I would guess that after 8-12 weeks you should have some relief. What have your doctors said to expect?

My saving grace has been exercise. I’ve been a gym rat for decades and even when I felt my worst, still exercised nearly every day. I know that it’s hard to get going, but even short walks and some fresh air can help things improve.

I hope that you experience relief soon.

I understand how it feels to not know really what is going on with my body too. So many questions, so few answers. Please keep checking these posts. I have found much comfort from these posts. Maybe all of them will answer what you are dealing with personally BUT the comfort you may be able to feel is you are not alone.