aps or anticardiolipin pregnancy experiences please

[Melody2]

Hi everyone,

My husband and I really want to have children and are frustrated because the doctors keep saying it's really unsafe for me to have a child with my positive anticardiolipin antibodies. But I am reading about others who seem to have managed, and I was really hoping to hear some of your stories from those of you who have aps or a positive anticardiolipin antibody on how your pregnancies went and what sort of treatment you used, or if you even needed treatment (for those of you with the antibody but not full aps). My lupus is in a bit of a remission right now with only minor flares, that I don't know are necessarily flares or just an ongoing problem...such as bad fatigue, occasional lupus fog etc, stiff joints...but nothing like the three years I was in a flare for where I was just a write off. I am not on any drugs, I have been fortunate enough to emerge from this flare without any meds except for baby aspirin and salmon oil...very healthy diet. Plus, I am not working so am able to really manage my stress levels at the moment. style_emoticons/<#EMO_DIR#>/biggrin.gif So I have been one of the lucky ones, I know. I was hoping you could share your stories, as hearing others' experiences can help me be more informed and know what to expect or what to ask. I know everyone's experience will be different...but sometimes I think doctors can be overly cautious and patients can lose out on something extremely important like a family. I would love to hear your stories or feedback.

Thank-you! style_emoticons/<#EMO_DIR#>/wub.gif

Melody style_emoticons/<#EMO_DIR#>/clover.gif

[pnutts]

Melody,
My personal experience.......
I'm positive for this and even had a blood clot to my lung several years ago ( this before being dx). I am on blood thinners (coumadin) for this reason.
I have had two successful pg since then. I had to switch to Lovenox injections prior to getting pg. My first priority was to get a knowledgeable Rheumy. and an OB who has lupus pt. Then once I was pg I was followed by a perinatologist (high risk ob)

Everyone is different with this dx. I'm sure you could find a doctor to support and help in what you decide.

Good luck.

[Melody2]

Thanks for your replies. style_emoticons/<#EMO_DIR#>/Thanx.gif I'm just waiting to finish up with some tests over the next two months with a cardiologist, then I think I'll have to just bite the bullet, and go for it. I hope my neuro will be behind me and can recommend a good high risk ob (I am at the moment in search of a new rheumy), preferably one with experience with lupus and phospholipids. It's nice to hear positive success stories.

Melody style_emoticons/<#EMO_DIR#>/clover.gif

[Pollyanna]

Hi Melody and welcome to our world!

My one and only pregnancy was full term and healthy (9lb - 14oz healthy!) despite the APS. I wasn't fully diagnosed at the time, but my OB-GYN told me that my blood was "thick" and because of it, I would be considered high risk. It took 6 months of bed rest, gestational diabetes, LOTS of weight gain (I'm sure the chocolate milk shakes had nothing to do with it) style_emoticons/<#EMO_DIR#>/sick.gif and plain old determination, but our miracle son was born prematurely by C-Section, but healthy.

My point is that you can do it, but be sure to get expert help and follow their advice. I'll keep you and your hub in my prayers and be sure to let us know how things go!

style_emoticons/<#EMO_DIR#>/wub.gif Pollyanna

[Hatty]

Dear Melody

Just to say I think you are quite right not to just accept a ban on having children: doctors around the world seem to disagree so much on our disease and its consequences re babies that it's always worth getting a second opinion. I have certainly managed to have two problem free pregnancies with lupus and positive anticardiolipin (although not extremely high, can't remember exact value) and just needed to take low dose aspirin and be scanned frequently to check baby's progress. I wish you all the best and really hope you can have children, as they are wonderful (although exhausting: I have a 19month old climbing the furniture and a 4 week old who loves to start the day at 5am... sometimes I wonder if a dog mightn't have been easier... style_emoticons/<#EMO_DIR#>/smile.gif

Good luck and love Hatty

[Melody2]

Thank-you Pollyanna and Hatty for your replies as well. style_emoticons/<#EMO_DIR#>/wub.gif I really appreciate the feedback and support, as well as hearing that others have gone on to have the family they so desired despite everything. I have a question I just thought of because I just got over a doozy of a three day migraine that my neuro says is the result of my anticardiolipin antibodies...did you experience an increase in any migraine problems?

Thanks again to everyone for your replies, it means a lot to me, especially since this is such an important topic for me right now! Thanks for your encouragement and support. style_emoticons/<#EMO_DIR#>/wub.gif

Melody style_emoticons/<#EMO_DIR#>/clover.gif

[jen74]

Hello. My name is Jen, 31 years old. I have a 3 month old girl. I also found out during my pregnancy that I had ANA antibodies and anti-cardiolipin antibodies. I was sent to a high risk doctor. I had to take baby asprin every day and have lots of extra appointments. The last 3 months we had sonograms every week and nonstress tests and bio-physical profiles done. It was alot of running around, but it was all worth it. I think even people with Lupus are able to have babies, just have to be monitered closley. I had a scheduled delivery where they induced my labor even. Good Luck, Jen style_emoticons/<#EMO_DIR#>/foryou.gif

[Melody2]

Hi Jen,

Thanks for your message! Congratulations on your little girl, that is so wonderful! style_emoticons/<#EMO_DIR#>/jump.gif As I wrote before, it's such a huge encouragement to hear from others who have gone before me and had successful pregnancies despite lupus and anticardiolipin antibodies or aps. I just saw my GP recently and he told me he knows nothing about my anticardiolipin antibodies and doesn't see how they'd be a concern in a potential pregnancy! Talk about ignorance! (Same doctor I had problems with before, he just doesn't get it). I'm seeing a new rheumy next month who hopefully will be more familiar with this situation and able to advise me or refer me to a high risk ob when the time comes to try and conceive. But when I start to feel afraid or aprehensive (scary reading sometimes! Though knowledge is power, sometimes it can make one too nervous!), it helps to hear your success stories. Thanks again for writing!

Melody style_emoticons/<#EMO_DIR#>/clover.gif

[lostangel]

Hi there,

My first child was born healthy 7lb 11oz. My second child was unfortunately stillborn at 37 weeks last april due to clots in the placenta. I was diagnosed with APS and Lupus. I am now pregnant again with my 3rd and i am on 75mg aspirin and 40mg clexane (heperin) injections daily. I had my 12 weeks scan last week and everything is fine so far. The doctors have every confidence that with the reatment i will have a healthy pregnancy. I really hope so as i couldnt handle another loss.

Before the stillbirth we ahd no idea of my condition. I only seem to display symptoms during pregnancy. I would most definately give it a go providing you are confidend in the care you are being given.

Love alison xxx

[Melody2]

Hi Alison,

Thanks for your post, and congratulations! I wish you well with this pregnancy, keep us posted to how you are doing. style_emoticons/<#EMO_DIR#>/biggrin.gif

I have a bit of a concern that my problem with my antiphospholipid problems may end up not being clotting but the opposite with low platelets...I go through periods where suddenly I have lots of bruising and menorraghia that they haven't figured out yet...I wonder if that could be from the antiphosphlipids? In that regard I wonder if blood thinners may prevent clotting but put me at risk for excessive bleeding possibly? I suppose all one can do is go for it (provided I can find a high risk ob familiar with lupus and clotting disorders), but I must admit I am a bit envious of my friends that don't have all this weighing on their minds when they become pregnant! style_emoticons/<#EMO_DIR#>/crying.gif style_emoticons/<#EMO_DIR#>/smile.gif

Thanks again to everyone who posted, it gives me some insight as to how other people have managed. Has anyone ever experienced thrombocytopenia due to their antiphosphlipids? I know it's less common, but a potential complication as well as the clotting.

Thanks everyone,
Melody style_emoticons/<#EMO_DIR#>/clover.gif