My husband was diagnosed with APS in 2007, but nothing was said about Lupus antibodies. I guess the two go together from what we have learned now. Anyway, a couple of months ago he was seeing a cardiologist & I asked if he should be seeing a hematologist as well. The cardiologist said it would be good to get a basic relationship with a hematologist & let our family doctor do maintainance, & seeing the hematologist at least once a year.
When we went to see the hematologist, he said my husband had the Lupus antibodies & because my husband's hemaglobin was 16, he was also told he had Polycythemia. A hemaglobin of 16 isn't too high in my opinion - it had been over 18 last April when he had a vein rupture from the build up of pressure from a blood clot & blood poured from his nose for 1-2 hrs before he received any treatment or his hemaglobin was even checked & it dropped to 10 before surgery could be done. But the hematologist ordered 7-8 large vials of blood to be tested & a CTscan of his liver & spleen - the CTscan was normal. He also drained a unit of blood from him. All of this was to see why he was producing so many red blood cells & why his blood pressure was staying so high. After the phlebotomy, his blood pressure slowly started coming down. The doctor said that if the phlebotomy hadn't worked, they would have had to do a bone marrow test. At the same time, his testosterone levels were checked & his injections were reduced slightly because his levels were too high. This told the hematologist that my husband has primary APS with Lupus antibodies with secondary Polycythemia, not Polycythemia Vera. Polycythemia is very rare & is usually caught while testing for other things. He is to continue on the same treatment he has always been on, Warfarin, & when he starts feeling headaches & pressure building in his head, he is to start monitoring his blood pressure. If it starts getting high, he is to get another plebotomy. He may need it once a year, twice a year, who knows how often - it is just something he has to monitor.
In the meantime, he will have our family doctor monitor him & see his hematologist either once or twice a year - I can't remember.
So I am wondering if anyone else has this combination?