antiphospholipid syndrome?

[gina]

hello. i've just tested positive for this. does anyone know about it?
thanks.
gina

[PookieLove]

Hi Gina - I have a clotting disorder and know that people with AA (antiphospholipid antibodies) and my clotting factor are treated the same way during pg -- with blood thinners. Do you have any other questions?

[gina]

oh so many. do you have children? how did you discover you had this? what is your current treatment for this? how often do you have your blood checked? any complications for children born to mothers with this condition? etc.- any information you can share would be greatly appreciated! suddenly so much more to worry about!
thanks.
gina

[cami2u2]

Gina, I don't know if I have antiphospholipid syndrome or not. How did they test for this? I have been wondering about this for the last year since reading about this syndrome. Let me give you a little history.

I have had 4 previous unexplained miscarriages possibly more that I didnt know about. I did have a dd that was term no probs at all in the middle of all these miscarriages. The last time I was pregnant, at 7 weeks I developed a blood clot in my subclavian vein and my external jugular vein and was put on blood thinners for the duration of my pregnancy and while breastfeeding. They could not figure out why I got the clot in my chest and neck and had never heard of this except in people who do weights. (which I do not do) I was on heparin and had a subcutaneous pump that I had to change the site of every 2-3 days which sure beats getting stuck 3-4 times a day. Once my bloodwork was fairly stable, (they liked my ptt to be around the 40's to 50's if I remember correctly) I had to go once or twice a week to get labwork (usually Mon. and Fri.) If my ptt was not within limits I had to adjust my heparin level and go again the next day and so on until it was what it was supposed to be. (this was quite often) The heparin is safe to use while pregnant because the molecules are so big it cannot cross through the placenta.

I now take a baby aspirin a day as suggested by my dr. I am very curious if I do have the antiphospholipid syndrome though.

[whateverdidiwants]

I was diagnosed with AA after 3 first-trimester miscarriages (and no other symptoms such as blood clots in the legs, etc).

For my fourth pregnancy (dd will be 1 next week! ), I charted so I would know when I was ovulating and then started taking 2 shots of heparin daily 3 days after o'ing. Most docs will tell you to wait until you have a positive hpt before begining the injections but research shows that it's not as effective if you wait because microscopic clots can form in the uterine lining and interfere with implantation. After I got a positive hpt I switched to Lovenox, which is a lower molecular weight heparing, and which does not require as many blood tests to measure your clotting levels. I only had to go to the hematologist's once a month for bloodwork.

At 36 weeks I switched back to heparin and continued it for 6 weeks post-partum.

Risks during the pregnancy:
* higher incidence of miscarriage due to clots
* higher risk of IUGR (intrauterine growth retardation, where the fetus doesn't grow properly because it can't get sufficient nutrition from the placenta).

Because of these risks, I saw a high-risk ob every 2 weeks and got frequent sonograms to make sure the baby was growing on schedule.

Please feel free to PM me if you want to talk about it. In the meantime, here are some links you might find useful:

http://www.repro-med.net/info/cat2.html

http://www.dartmouth.edu/~obgyn/mfm/PatientEd/APS.html
http://www-admin.med.uiuc.edu/hematology/PtAPS.htm

[gina]

susie,
it sounds as if you have this! i wetn to my gp today and he seemed unalarmed by the diagnosis- did not feel that i was in any danger- he felt more concerned about the quality of my eggs (just turned 41)- think we'll give it one more try and then think about ivf- i see a hematologist on thurs. to find out about my levels and preg.- they suspect it is more common than people realize- you can be carrying it for many years and it lays dormant in your system- i feel somewhat relieved as i am a healthy, athletic person- stroke/blood clots seem not part of my health package! ask to be tested!

[cami2u2]

Thanks Gina, My next ob appt I am going to ask about this.

[gina]

hi "whateverididiwants"-
thanks for all the info. did you take a baby asprin as well- i'm waiting for test results and hoping to get my period soon (had m/c a month ago)- was advised to take baby asprin and start ttc next cycle (i'm 41yrs. old)-
does anyone know how long it takes for af to return? had a "natural" m/c a month ago-
good luck to all of us soon!
gina