I had posted 8 months back about sudden onset of jaundice and hemolytic anemia. So my brother was tested with ANA and complement factors for SLE and was diagnosed as questionable lupus but hematolgist believed it was lupus although my brother didn't have any physical symptoms or manifestations of lupus.
So the last eight months he has been on steroids which whenever they tried to taper with other steroid-sparing drugs, the platelets go down (hemoglobin, RBC and WBC were ok) , but always within acceptable limits of around 30-90,000.
But suddenly two weeks back when his steriod was again tapered down after relatively good platelet numbers, his platelet went down to 6000. Got him admitted, was given high dose steroids (pulse therapy) and after 3 days his platelets came to 90,000. Was discharged with heparin injections for 10 days and then oral warfarin to regularize INR. But on third day itself when he was taking the heparin injection he had a big skin bleed (eccymosis) at injection site. He was tested for platelets and it had crashed down to 3000 and we again got him admitted.
The most significant thing to note here is he was tested for HCV during first admission and it came positive. Doctors are assuming this is incidental but I believe this could have triggered the hemolytic anemia eight months back when he first had the jaundice event but the hematologist didn't work him for Hep C at that time and straight away went to look for lupus. I read that HCV can mimic lupus symptoms and also come as ANA positive. If this was caught and addressed at that time , I believe we wouldn't be in this situation today. However his liver is fine with no cirrhosis.
So after the 3000 platelets he was given pulse therapy again for 3 days and simultaneously started with Rituxan and eltrombopag and also treatment for HCV. Platelets improved to only 13000 yesterday but again fallen back to 5000 today as I'm writing this. The doctor did mention it was a "nightmare" treating a patient with both APS and ITP. But despite all this the positive thing is my brother remains asymptomatic with stable vitals and no bleeding incidents so far and whenever they draw blood or give injections, there is no bleeding and stops immediately. But yet his platelet numbers are looking so scary. I know the doctors are doing their best but they are also shooting in the dark and hoping for the best and are saying the numbers are not important but to treat the patient as per symptoms.
Incidentally before the first crash of platelets down to 6000, he also had his covid vaccination and a significant stress event.
Sorry for the long post, but I'm sharing so that it might help someone else and also as I'm feeling overwhelmed and if anyone can shed some more light on what's happening. Couple of questions I have is can we start him on IVIG immediately to get his platelets up temporarily until his other meds (eltrombopag, rituxan) start kicking in or wait as he still stable right now with no bleeding incidents. Thanks!
