Antiphospholipid Syndrome Support Group

Im currently in the same situation as you. I thought my new doctor would look at my results and get me the help i needed but she didnt and now Im waiting for my turn with the specialists. Got to start my story all over again, hope they dont consider me a nut case and I can keep my emotions under control. As of yet i have not been able to talk about my tests, my history any of it without breaking down. Good luck to you!

Well after being diagnosed with Lupus in 1990 when I was 20 and then Antiphosphilipid Syndrome in 1991, I was devasted also. At this point in my life my Rheumatologist prescribed 1 baby aspirin a day. But, in 1996, I was told the wonderful news of my pregnancy but has some scary concerns that went along with the joy. I schedule an appointment with my OB to confirm and he immediately referred me to a Perinatologist that handles high risk pregnancies. The Perinatologist enrolled me in a study with the University of Utah because it was rare to have both diseases. I had to go into the hospital once a month for about 4 hours so they could administer IV's. I never found out the results but all paper work was sent to the University of Utah. During the study, my perinatologist designed a plan of action. When I was first pregnant, he stopped the baby aspirin and prescribed me heperin shots twice daily in the stomach. He measured my growth weekly and did ultra sounds twice a week to make sure the baby was still alive. During this whole time, he kept explaining that I was a high risk pregnancy and I could miscarry at 26 weeks. I think this was important because it really kept the situation real to me and I knew the risk to me and the baby. I ate so good during my pregnancy and stayed away from junk food because I wanted all good nutrients to go to the baby incase I had to deliver early. I ate so good that I was gaining weight at a good rate but I needed more fat added for the baby. So my OB allowed me, encouraged me to eat junk for for a while to help gain fat. Don't get me wrong. I was not skinny and I don't have an eating disorder. I was just eating so good that I needed to add more fat to help develop the breastmilk after delivery. So, during my pregnancy, I had a regular OB watching over me, measuring my stomach and weight etc. and then I had my Perinatologist wathcing over me at the same time. When I delivered at 40 weeks, I had a mass of doctos in my room ready for any emergency that occurred with me due to bleeding because of the blood thinners. And, to let you know, my baby boy came out perfect. 6 lbs. 14 oz. One year later, I got pregnant again and started Heperin shots right away, in the stomach. I also carried her 40 weeks and had no complications with my delivery. She weight 7lbs. 1oz. Now my kids are 8 and 10. They each know that they are gifts from GOD because all the cards were stacked against me carrying these babies to full term. They have learned to understand my Lupus the best they can at 8 and 10. Poor babies had to see me almost lose my life in April 2005 due to a Subdural Hematoma. I guess my job is not finished here on earth and GOD has more for me to do. I do get depressed at times because of everything that is wrong with me. I always ask why me? But now I know why. The answer is because GOD picked me to show others that if you believe in the lord, he will never leave your side. By having this disease, GOD has really opened my eyes to what really, really, really is important in life that you did not notice before. GOD picked me as an example and I am so grateful for this. I know that sounds weird to be grateful for this disease but it really makes your days count because you don't know what is going to happen. But what helps me is that, no one is guaranteed a certain amount of time on this earth. Whether you have a disease or not, GOD could take you at any time. All I know about my Lupus is that I try to stay active even though I have no energy. I push and push myself to eat right. Please, stay away from saturated fats because that intensifies the inflammation in the Lupus. Also, green leafy foods like Spinich, Brocolli can make your blood clot more. More Flaxseed helps alot in your diet also. Research and change your diet. I hope this info helps. Good luck to you!

Hi there
I know there are posts on the miscarriage community as well but here is the standard for treatment of antiphospholipid antibody syndrome AND recurrent fetal loss as you have unfortunately had:
1) Women with medium or high titers of anticardiolipin, one or more fetal losses after 10 weeks gestation, but no history of a vascular thrombotic event are offered combined therapy with low dose ASA and low molecular weight heparin (Lovenox) based upon limited studies demonstrating therapeutic efficacy as follows:

2) Low dose ASA (81 mg per day) is begun as soon as conception is attempted

3) LOW MOLECULAR WEIGHT HEPARIN (LMWH) Can be used instead of unfractionated Heparin with an initial weight adjusted dose: Lovenox (enoxaparin) 1 mg/kg subcutaneously once daily .
4) The dose of Lovenox is then titrated to maintain a peak anti-factor Xa level of 0.2 to 0.3 U/mL four hours after injection in each trimester.
5) LMWH therapy should be stopped at 36 weeks of gestation with the substitution of unfractionated heparin therapy

Hope this helps
Dr O.

I was instructed to take a baby aspirin a day before conceiving and then through pregnancy. It worked great.