Pregnant with positive Lupus anti-coagulant - aka "sticky" blood
I have lupus now over 10 years.....
I am 7 1/2 weeks pregnant and found out wednesday that I have the Lupus anticoagulant - also known as "sticky blood". I have not tested positive for this until I got pregnant.......which is probably caused because of the hormones that are raging now.......
My Rhuemy said that a baby asprin will be ok for now.....and once he discusses it with my OB, they will discuss the other option which is heparin shots to thin the blood out to make sure that proper blood supply gets to the placenta for the baby.
My question is.... has anyone had this problem?.........and can you tell me your story....?? I don't know of anyone who has had this and I am wondering how people do with this problem during pregnancy......and since all that I read up on it scares me to death......I just want to hear real-life stories.
thanks.....all that anyone can contribute is GREATLY appreciated......thanks much,
a very concerned mommy to be,
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I suffered from an inability to become pregnant and spent years undergoing infertility treatments in order to have children. During my infertility testing I was found to have very high antiphospholipid antibodies (anticardiolipid IGg type--the ones most likely to cause problems). I also had a positive ANA. Lupus had been mentioned to me by my primary care doc, and I had some other tests, but the rest were negative. I did not have "classic" lupus symptoms like fever, joint pain etc. so for the time being the idea of lupus was dismissed, and I went about trying to get pregnant.
THese lab findings were actually found between child one and child two. During my second pregnancy I was treated with baby aspirin during my first trimester, and nothing else. I began to experience daily, around the clock contractions at about 5 1/2 months. I was not dialating so I declined meds to stop the contractions. I continued to experience the contractions, but had a full-term pregnancy.
When I initially found out about the antiphospholipid antibodies, I was told that doctors were cautious about prescribing the heparin because it can cause harm to the mother. A woman had been reported to have had a brain bleed while receiving heparin, and since I had not had any miscarriages it was not recommended.
I wanted to add that todate I have not been diagnosed with "clinical lupus", but I definately have an autoimmune problem. I had autoimmune thyroiditis following childbirth, and I suffer from multiple neuropathies (spelling?), and I recently tested positive for antineuronal antibodies. These antibodies are positive in CNS lupus, and I am being referred to specialists because of this. My mother and my sister have SLE. I suspect that I do too.
My advise is take the baby aspirin, and follow your doctors orders, I would at least want a consultation with a doctor who specializes in high-risk pregnancies, if not be followed by one. My sincere best wishes to you, Susan
I was recently diagnosed with lupus anticoagulant after having a blood clot in my leg and three blocked arteries.I am well past the age of having kids, so can't help you there.My treatment was 3 months of fragmin injections then on coumadine.I have to go for regular blood tests to monitor the amount of coumadine.If I were you I would keep on top of treatment as soon as you are not pregnant any more so you avoid blood clots! Good luck with the baby!
i am a mother of two,28, and i suffer from sticky blood, unfortunately i didnt find out until two weeks after giving birth my last baby, when i suffered a small clot on the brain. my problem was i didnt get dx until this point as well, although i knew i had lupus since the age of 13 .but because i didnt have a diagnosis sooner,i didnt get the right treatment during my pregnancies. luckily u have the knowledge of this, you will get the right treatment,and you and your baby will be fine. all the best for the future.
It unfortunately took two miscarriages for me to get testing that pointed out that I had anticardiolipin antibodies... and lupus. My rheum says that next time I will go on heparin; I'm already taking the baby aspirin daily. I do hope that your doctor puts you on heparin - at least you know ahead of time that you have this and it can be treated mostly with success. Please let us know how you are doing.
I have had 2 succesful pregnancie thanks to an asprin a day and heparin injections. I had 2 losses at 14 weeks and then tested + for the antibody. I saw a prenatal specalist and a gyn that treated high risk.
I had absolutely no problems being on the heparin and I even delivered my son before I had a chance to stop taking the heparin I didn't beed excessively and everything turned out fine. Watch what you read because people love to post horror stories.
I was put on heparin from week 2 of my pregnancy and I would do it again because I know that the benefits really do outweigh the risks.
I am 24 years old. I had a blood clot in my leg that kept breaking off to my lungs when I was just 21 years old. At the time I was diagnosed with an unknown blood clotting disorder. At 22 I became pregnant for the first time and was seen by a high risk specialist who put me on lovenox alternating with heparin. I took two shots a day, one in the morning and one at night. I won't lie about it. It was difficult at times. I got to a point where I could no longer give myself the shots. My husband, mother, father, or father-in-law would give them to me. My labor was induced so that I would be in a controlled environment to deal with any bleeding or clotting problems. At age 24 I became pregnant a second time and miscarried at 8 weeks. I finally went to have a complete blood screen done and found out I have the lupus coagulant. I was glad to know there was a reason I had miscarried and that it wasn't something I had done wrong. I was told I would just need to be careful when planning to conceive and while carrying my baby.
Thanks for all the input. I hope my story helps someone.
I'm not sure if the reference to "watch what you read because some people like to post horror stories" was in regard to my mentioning that a woman had died from a brain bleed on heparin (spelling?)--but if it was--the comment certainly didn't bring me pleasure or intend to induce horror. It was simply what my reproductive endocrinologist at a teaching hospital (big time specialist) told me. He would not put me on the drug inspite of my labs because I had never had a miscarriage, and he felt the risks did not outweigh the benefit. Given MY history he thought baby aspirin was enough. Had I had a history of miscarriage maybe he would have put me on the drug -- I don't know. The best thing to do is listen to your doctor, and if in doubt get a second opinion. Best wishes.
Hi I am almost 26 now with an almost 8 yr old daughter whom I had no problems with the pregnancy or delivery. I have had numerous miscarriages over the past few years. They FINALLY figured out that I have the lupus antibodies as well and are trying to do additional tests. Ok here is my question.... for those of you who have had the heprin shots, do you know of ANYOTHER locations that you can take the shots besides your stomach, hip and thigh? I have had so many needles BUT those locations bother me alot. My husband and I are going to try to have another baby but, I am waiting to get more info on these shots. I tried the baby aspirin and had a miscarriage at 9-weeks so the Dr. said taht I need the shots. Could someone please let me know if you know of any other locations for the shots? Thank you.