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.