Hi all,
I hope you're all managing well in this New Year.
I've had GPA for almost 2 years and have Ruxience infusion every 6 months. I've been off prednisone for one year, worked very hard to get off it due to side effects. I've had ongoing pain in my joints, muscle weakness, oral ulcers and fatigue both physically and mentally. My rheumy says it's not normal since my GPA is considered in remission with ongoing Ruxience. She did say it could be related to severity of the GPA before treatment and it may take longer to recover. Labs are stable but ANCA still present so Ruxience will be at least another 2 years.
I'm stuck in a cycle of exercising to gain strength, then increased pain due to exercising. I'm working with physio and being careful not to push too hard since I seem to injure way easier than before. I'm not back to work yet but have a high stress job so unsure if I will return. I have trouble managing my daily living due to pain and fatigue. I've read this can be a side effect of Ruxience and I seem to get symptoms from medication even if its a 1-5% chance.
I'm wondering if anyone else has similar symptoms, or did but they resolved with time?
I understand we are all different with how our GPA manifested and severity, but if anyone who is on Ruxience/Rituximab has a similar story I'd love to know I'm not alone and there is hope of returning to a somewhat normal lifestyle. Yes, it could be worse so I'm thankful for modern medicine!
Thank you for being there,