I have Hughes Syndrome???

Hello! I commented that I am new to the forum, I was diagnosed with Hughes Syndrome four years ago. I have not had symptoms of thrombosis, abortions, etc.. My only symptom was cardiolipins positive, positive lupus anticoagulant, and autoimmune hemolytic anemia. My treatment is with Plaquenil 200 mg, 100 mg and aspirin Inmuran 100 mg.

Treatment is correct?

Are saying?

6 Replies

oldestnewest
  • Hello there, this treatment sounds good so far, and especially if your doctor or medical team are regularly keeping your tests updated and generally a close eye on you. Some people only have aspirin and do well, and some need or find plaquenil works for their lupus. I myself am only on aspriin, not having had any clots outside of pregnancy. Out of interest where are you located, and also welcome to our forum. Mary F x

  • Welcome to the forum. It sounds like your medical team has your symptoms under control. Do you have any joint issues, pain, tiredness or anything related?

    Has the anemia resolved since then?

    Kristina

  • Same as you and same treatment! also take assorted pain killers!

  • I take the same things...diagnosed 2.5 years ago....went to a Rheumatologist that tests for Lyme Disease....with a new test.....fortunately she informed me "you are free from all tick borne illnesses...but you have something called sticky blood"...she is an excellent MD; and took it upon herself to test me for Autoimmune Disorders as well as the Lyme....I am forever grateful that she prevented me from getting the more serious symptoms of APS aka Hughes

    DIsease

  • Kristina, six months ago to stop the medication, my latest analysis result beta2 glycoprotein negative and positive anticardiolipin little, these analyzes did to me in July since March that the medication consumption not by choice, I have my doubts about the diagnosis. My autoimmune hemolytic anemia is no more. and I have no symptoms. I have only psorisis since age 15.

      are saying? remission??

  • Remission? Or symptoms have resolved with effective treatment! Many of us have seen a lot of those immunological blood values go up and down. And the immune system has this baroque complexity to it that usually only hematologists and rheumatologists can even partially grasp.

    In 1986 I was diagnosed with thrombiocytosis after DVTs and a platelet count found to be double normal. I was put on warfarin and did well. The platelet number dropped @1990 and the warfarin was discontinued. That's when the migraines which slowly evolved into mini strokes began. I was diagnosed with APS in 2001. Now did the high platelet count have anything to do with the beginnings of APS? I say "yes," not based on any known blood chemistry or immune system pathways , ( or at last any known to me,) but based on the statistical probability of both conditions occurring independently.

    Does my experience have anything o do with the resolution of your anemia? I have no idea.

    But in my case, a return of a blood value to " normal" did NOT indicate that all of my blood wierdnesses were over.

    Gina