Managing Single Organ SLE-ITP

[@patriciap5918]

My sister just admitted to hospital 2 days ago with COVID-19, for precautionary reasons since she has SLE & APS. Initial testing showed thrombocytopenia, & low C3. They suspect ITP so treatment is platelet transfusion & IVIG as her platelets dropped under 10k. She has a history of DVT clots and strokes related to APS. She historically received platelet and RBC transfusions due to SLE/ITP. Before this hospitalization she was on Warfarin / Coumadin to keep her INR at therapeutic level 2-3. In light of current thrombocytopenia they gave her Vitamin K to reverse Warfarin anticoagulation- INR now 1.3. Their main concern is the thrombocytopenia. As a family member who has lived through this for 30 years the clots and the transfusions my main concern is thrombocytopenia AND Thrombosis = BOTH!!! I can not understand why the hospital is treating her with hydroxychloriquine rather than steroids. I also can’t understand why they have not tested her Antiphospholipid antibody titers. She has confirmed Antiphospholipid Syndrome. Historically she tested positive for Lupus Anticoagulant and anticardiolipin anti body titer IgG high titer and DRVVT persistently positive. I am very upset that they currently have not tested her Antiphospholipid antibody levels - her Hematologist said they don’t intend to test since it won’t alter the course of treatment for the thrombocytopenia but might the levels elucidate the likelihood of a clot to form? Seems kind of important even if only to observe her that much more closely. What does happen if she gets a clot with her blood so thin? What will they do? I’m beside myself!

[@noneyabusiness9441]

I can only stay awake for 3 to 4 hours and I have to sleep I have Lupus with ITP.. I can’t do this. My bloodwork is normal other than Low platelet count and sometimes red blood cells

[@happydays5989]

I've been diagnosed with both Its terrifying Get a good support systen You need to stop saying uh umm uh It feels like you are reading off teleprompter you've never seen

[@jayshoneybee]

information....um...uh, uh, uh, um information uh. i can't pay attention to the video

[@noneyabusiness9441]

Right

[@Bichonfrise369]

Ah ,ahh, ahhh,aaah.