GI symptoms
I'm fairly recently diagnosed and have now been on plaquenil for just over 3 months (it's working!!!) after about 18 months of new and ongoing symptoms. I've been through a whole lot of specialists to get to this point (rheumatology, neurology, and immunology being the main ones, with urology thrown in for good measure) as one of my symptoms was proximal muscle weakness. I also have longstanding GI dysmotility where parts of my system just decided to go into early retirement and require tube feeding.
My neurologist flagged that I had an unusual pattern as he largely sees people with POTS/dysautonomia developing GI symptoms, whereas I developed POTS a few years after GI symptoms following catching COVID. My immunologist has flagged this as possibly being autoimmune with some cases of lupus presenting with only GI symptoms at first (I believe he is going to try to get in contact with my GI team). My colon has especially worsened in the past 12 months. I'm just curious as to whether anyone has any experience with this and what treatment might involve?
Posted Jun 27, 2026, 10:34 AM UTC