Hi everyone. I wanted to come back and update you all since you were so kind and helpful before. I have seen a couple different rheumatologists and rare disease specialists. I haven't made it to mayo yet, the trip expensive is a bit big atm unfortunately. That said: two of my doctors have two different theories; fortunately the treatment is the same! My rare disease specialist believes I have seronegative Antiphospholipid Syndrome, due to my frequent livedo reticularis and other APS indicative symptoms. My rheumatologist believes I have seronegative Sjogrens Syndrome and some kind of seronegative MCTD. Either way, I have been treated with 200mg then 300mg Plaquenil for the last 5 months or so. Within weeks my bursitis and tendonitis was half of what it was, and my joint pain was significantly reduced. Now, several months out, I have about half the joint pain I had before, and only very mild tendonitis and bursitis, though it persists in my ankles, shoulders, hips, and wrists. I am going to be getting a central line soon so that I can receive more regular infusions for my POTS, which makes a huge difference in my wellbeing, and I recently had sinus surgery which has helped my breathing and infections a ton! They also diagnosed me with Common Variable Immunodeficiency as my IgG was very low, which explains the frequent infections. I definitely still struggle with a variety of things, neck and right upper quadrant pain have been the biggest issues for the last year or so. I may need hip reconstruction shortly as my right hip, we've found on MRI, has some structural abnormalities, tendonitis and bursitis, a tear in my labrum, and a tear in my gluteus maximus. But overall I am doing much better and am very fortunate to have found physicians who treat my symptoms, not my bloodwork, and listen to my concerns. Thank you all again!

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