I was diagnosed in 2007 (33) with Sjogrens, no treatment until age 40 when the disease decided to flare, then was only given Plaquenil. Over the next 8 yrs I would continue to get worse and had to change rheum due to my previous saying there was nothing she could do. I have finally found a rheum that is trying to help manage my symptoms. In 2022 I started with Imuran then Cellcept, both caused a severe cutaneous lupus flare, switched to Rituxinab in 2023 and that worked up until this year. I’m now on Rinvoq, helps with joint pain, but unfortunately this med is causing me to regress with all other symptoms. My rheum is fantastic and is trying to help manage my Sjogrens the best he can.
Im SS-A positive >8.0POS w/ANA Titer that is usually 1:1280. For me this disease is harsh, with fatigue, muscle aches, weakness, and now possible ANS involvement. My suggestion advocate for yourself, if one rheumatologist is not working with you find another, there is no direct treatment (yet) but hope is in the horizon.