I have lupus and the positive lupus anti-coagulant (aka: anti-phospholipid syndrome) and may be pregnant. Earlier this year I was pregnant and at 22 weeks the baby died and I had to be induced, etc. A specialist I saw is doing a study on women with this condition and pregnancy where the woman takes 10mg of prednisone every day until they are 14 weeks. As well as taking aspirin and/or heparin. Is there anything else anyone can tell me about this, or experiences they've had with it etc? Thanks.
I had Lupus diagnosed in 2003. In 2009 I fell pregnant with my now 2 year old daughter. I was already on Plaquenil and low dose Aspirin. The Obstetric department at another hospital put me on Clexane at 15 weeks as a precaution because at that stage I hadn't been diagnosed with APS but had tested moderately positive to these antibodies and I was also Anti-Cardiolipin positive. I had my daughter at 37 weeks after a relatively uncomplicated pregnancy. Then last year I fell pregnant again and the same hospital but different doctors informed me that I should not have been medicated in my first pregnancy and there was no need for Aspirin and Clexane in the current pregnancy because I had no history of clots of miscarriage etc. Long story short I went into labour at 17 weeks. I presented at the emergency department of my hospital (where I also worked) in agony, bleeding and with a two day history of presenting in labour. They told me that I was not at risk of miscarriage and I was to go home. I could not get out the bed to leave so they let me stay until I was ready. After 7 hours and no pain relief or care I gave birth to my son Michael who was born alive and then went to heaven whilst in my hand. I was alone in the emergency department. I was told a few hours later that I should of been on Clexane and Aspirin. This part of my story continues into a legal battle today due to medical negligence at all levels. What I wanted to say is I am now 6 weeks pregnant and the main hospital in the city where I live have started me on Clexane 40mg at 5 weeks, low dose Aspirin and my regular meds. I have scans booked at 8, 12, 16, 20 weeks. Be the squeeky wheel girls. There are doctors out there that believe in taking precautions and not waiting until miscarriages or other bad outcomes before prescribing Clexane, Aspirin and diagnosing Anti-phospholipid Syndrome. Even though these meds don't reduce all the risks women like us with these chronic illnesses have little to no chance otherwise. How many of our babies have to pass away? If you test positive to the antibodies or/and have Lupus they should do what they did with my daughter and just put you on the medication as a prevention. The more miscarriages you have also puts you into a higher risk catagory. It is essential to have your antenatal care at big hospitals and be seen by full Obstetric Medical teams with specific experience in these areas. At least if it happens again I can take some solitude in knowing that I and the hospital did everything they could. My daughter is a good sign to all that you can have a successful pregnancy if treated properly. It's an awful thing and I just feel for you all.