Anyone pregnant with anti-phospholipid syndrome (blood clotting disorder)?

[Anonymous]

How did you manage your condition and did you or your baby have any adverse outcomes?
I am TTC and just discovered I have an auto-immune disorder plus lupus anticoagulants, which are part of the Antiphospholipid antibody category.

Thank you.

[Anonymous]

I have three kids and I had something related to that or my mom did. Essentially my mom had 2 kids - but also had four miscarriages and a stroke during one of them and I happened to mention that to an OB and as a result - she wanted to do additional bloodwork on me, and some of it for either anti-phospholipids and/or MTHFR came back that I some but some but not all copies. my youngest is nine and I really don’t even remember all about it - but for my oldest who is 14 now - due to my having some copies (or whatever the terminology is) - I was referred to a MFM doctor for a certain period of time and he did some extra tests before he discharged me to just see the regular OB only, and then with my second, I gave all the related paperwork to my new OB (I had moved), and that time, I was referred to to a hematologist to run another bunch of extra tests for a certain portion of the pregnancy until they discharged me to just see the regular OB, and then with #3, they just said well, I guess it’s all fine, so we won’t do anything additional this time.

[Anonymous]

By the way - my mom still has never been diagnosed with anything. I just described that to the OB and she checked me for those possible things. My sister is now TTC and I recently told her about this too.

[Anonymous]

Anonymous wrote:I have three kids and I had something related to that or my mom did. Essentially my mom had 2 kids - but also had four miscarriages and a stroke during one of them and I happened to mention that to an OB and as a result - she wanted to do additional bloodwork on me, and some of it for either anti-phospholipids and/or MTHFR came back that I some but some but not all copies. my youngest is nine and I really don’t even remember all about it - but for my oldest who is 14 now - due to my having some copies (or whatever the terminology is) - I was referred to a MFM doctor for a certain period of time and he did some extra tests before he discharged me to just see the regular OB only, and then with my second, I gave all the related paperwork to my new OB (I had moved), and that time, I was referred to to a hematologist to run another bunch of extra tests for a certain portion of the pregnancy until they discharged me to just see the regular OB, and then with #3, they just said well, I guess it’s all fine, so we won’t do anything additional this time.

If you did not receive heparin or heparin with aspirin, during your pregnancies, then it's safe to assume you were tested for APS, but were not actually positive for APS.

[Anonymous]

Be oh so grateful you have a diagnosis. I've lost 6 babies ans almost my uterus before they found the rare clotting disorder. I'm attempting my last pregnancy on tons of drugs including lovonox.

[Anonymous]

Anonymous wrote:Be oh so grateful you have a diagnosis. I've lost 6 babies ans almost my uterus before they found the rare clotting disorder. I'm attempting my last pregnancy on tons of drugs including lovonox.

Coming back to say - lovonox may not be enough. In addition to my clotting disorder I also have abnormal immune activity. The problem is there are very few OBs or RIs that are trained to treat immune causes of miscarriage. If you get to miscarriage 2 or 3 it's time to reach out to a reproductive immunologist. There are only 5 in the US.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Be oh so grateful you have a diagnosis. I've lost 6 babies ans almost my uterus before they found the rare clotting disorder. I'm attempting my last pregnancy on tons of drugs including lovonox.

Coming back to say - lovonox may not be enough. In addition to my clotting disorder I also have abnormal immune activity. The problem is there are very few OBs or RIs that are trained to treat immune causes of miscarriage. If you get to miscarriage 2 or 3 it's time to reach out to a reproductive immunologist. There are only 5 in the US.

May I ask what your diagnoses are? Mine is Sjogren's, with suspected clotting disorder. Apparently no Plaquenil is needed, but heparin might be, as well as fetal monitoring.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Be oh so grateful you have a diagnosis. I've lost 6 babies ans almost my uterus before they found the rare clotting disorder. I'm attempting my last pregnancy on tons of drugs including lovonox.

Coming back to say - lovonox may not be enough. In addition to my clotting disorder I also have abnormal immune activity. The problem is there are very few OBs or RIs that are trained to treat immune causes of miscarriage. If you get to miscarriage 2 or 3 it's time to reach out to a reproductive immunologist. There are only 5 in the US.

May I ask what your diagnoses are? Mine is Sjogren's, with suspected clotting disorder. Apparently no Plaquenil is needed, but heparin might be, as well as fetal monitoring.

I'm on lovonox, prednisone, plaquenil, tacrolimus, metformin, and a bunch other supplements. I have weekly monitoring and bloodwork to make sure my immune levels don't rise. It's an extremely intensive monitoring program.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Be oh so grateful you have a diagnosis. I've lost 6 babies ans almost my uterus before they found the rare clotting disorder. I'm attempting my last pregnancy on tons of drugs including lovonox.

Coming back to say - lovonox may not be enough. In addition to my clotting disorder I also have abnormal immune activity. The problem is there are very few OBs or RIs that are trained to treat immune causes of miscarriage. If you get to miscarriage 2 or 3 it's time to reach out to a reproductive immunologist. There are only 5 in the US.

May I ask what your diagnoses are? Mine is Sjogren's, with suspected clotting disorder. Apparently no Plaquenil is needed, but heparin might be, as well as fetal monitoring.

I'm on lovonox, prednisone, plaquenil, tacrolimus, metformin, and a bunch other supplements. I have weekly monitoring and bloodwork to make sure my immune levels don't rise. It's an extremely intensive monitoring program.

Sorry, I have no diagnosed autoimmune disease. I simply have a clotting disorder and many losses under my belt of late first trimester and second trimester, all chromosomally normal babies.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Be oh so grateful you have a diagnosis. I've lost 6 babies ans almost my uterus before they found the rare clotting disorder. I'm attempting my last pregnancy on tons of drugs including lovonox.

Coming back to say - lovonox may not be enough. In addition to my clotting disorder I also have abnormal immune activity. The problem is there are very few OBs or RIs that are trained to treat immune causes of miscarriage. If you get to miscarriage 2 or 3 it's time to reach out to a reproductive immunologist. There are only 5 in the US.

May I ask what your diagnoses are? Mine is Sjogren's, with suspected clotting disorder. Apparently no Plaquenil is needed, but heparin might be, as well as fetal monitoring.

I'm on lovonox, prednisone, plaquenil, tacrolimus, metformin, and a bunch other supplements. I have weekly monitoring and bloodwork to make sure my immune levels don't rise. It's an extremely intensive monitoring program.

Woah.

That's not the medical standard of care for a clotting disorder and suspected auto-immune involvement but in the absence of an auto-immune diagnosis. Who prescribed all of this? The medications you list are heavy-duty ones, and I've never heard of a clotting disorder being treated with multiple anticoagulants in this way, plus tacrolimus, plaquenil and prednisone. I would caution you to beware of a doctor who would give you all of these things. I'm very sorry for your multiple losses, and I understand you really want to carry a pregnancy to term! But... please be careful. You don't want to suffer from cumulative side-effects of ALL these meds.

I remember you posted multiple times before. There is a reason why most doctors didn't want to prescribe all these things. It may not be what your body needs, and it's a treatment strategy that comes with heightened risk, to you.

[Anonymous]

Hi. I am currently pregnant with my #3. I take a daily lovenox shot plus baby aspirin. I have to start the lovenox from week 8 through the duration of the pregnancy.

[Anonymous]

If you’re in the DC area and have antiphospholipid syndrome, I’d reach out to Dr. Yogan Kanthi who is at the NIH Clinical Center in Bethesda. Dr. Kanthi comes from the Knight Lab a U Michigan which focuses on this syndrome.
https://www.nhlbi.nih.gov/science/vascular-thrombosis-and-inflammation#Meet-the-Team

I’d probably see if I could get an appointment with Dr. Knight at the Antiphospholipid Syndrome Program w/University of Michigan Health. Info is on this page: https://medresearch.umich.edu/labs-departments/labs/antiphospholipid-syndrome-research-labs

Wishing all the best for you.

[Anonymous]

I have antiphospholipid syndrome. I didn’t know it during my first pregnancy (thankfully there were no issues) but I had a massive DVT when she was a newborn and was subsequently diagnosed.

For my second pregnancy, I switched from warfarin to daily lovenox as soon as we started TTCing. Once pregnant I went to my normal OB/GYN as well as the MFM that they had referred me to. Everything was going smoothly. Then early in the second trimester, the OB decided my case was “too risky/complex” and sent me off to Georgetown, who handled the rest of my pregnancy and my daughter’s birth.

I was on lovenox for a month or so following the birth, then they handed my case back to my hematologist and I went back on warfarin.

The most important thing is to be on lovenox not warfarin, and you will get some extra monitoring during the pregnancy. For me, everything went smoothly and it really wasnt a big deal. I hope that is the case for you as well. I was shocked when my regular OB said they weren’t going to handle the pregnancy/birth, but I was happy with Georgetown so it all worked out. If you have any questions I’m happy to answer.