Antiphospholipid Syndrome Support Group

Hi, I am by no means an expert, and this antiphospholipid stuff is new to me, but I can tell you what I have read (my impressions only, of course). I was diagnosed "by accident" after my gynecologist did a blood test after they removed a benign uterine polyp in May of this year. I have two healthy children (ages 12 and 9) and had one very early miscarriage 14 years ago (I would not have even known it was a miscarriage had I not been vigilant about the pregnancy testing). THe miscarriage was so early (less than 5 weeks) so no one suspected anything. My mom had had three miscarriages before having my brother and then me (I am age 43), but she does not have antiphospholipids (she was just tested this summer).
Anyway, it appears that some people do very well with aps; others do not do so well. I think that those are usually people with Lupus or other autoimmune conditions. I do not have Lupus or any other condition. Some people appear only affected during pregnancy or high risk situations; others talk about difficulties all year round. A coworker of mine had something like 6 pregnancy lossses about 15 years ago (when they didn't so readily test) and then was tested and now has 3 children and even surrogated a 4th for her sister-in-law while on heparin. She has absolutely no complications now (I think she is older than I am) and has a high stress job (teaching special education). A neighb0or of mine found out about hers after her third pregnancy (we both have a 12 and a 9 year old, and she wanted a third child and then miscarried). She went on lovenox and has a third child. She does have headaches a lot, but appears to be in good health. So

I have been told that, being "event" free - meaning no hx of miscarriages, strokes, clots, etc. - that my risk is higher than the average person, but still less than 1 percent a year of having a problem. I take full dose aspirin and am in a clinical trial. I hope that they develop better treatments to protect all of us. I am in excellent health and am pretty athletic (at least I look athletic, in truth I am a klutz!). So, keeping active and in shape are a higher priority for me now that I know what is going on in my blood.

My guess is that there are more people out there with antiphospholipids who never get diagnosed. I began seeing a hematologist (I didn't like the first one I saw,so I found someone more knowledgable) and he stated that they have no idea how prevelant this is, because people only get tested after a series of miscarriages or a blood clot or a stroke.
I never would have been tested if it not fot the gyn. I happened to see (she is new to me). I am pretty asymptomatic - I do get some tingling in my left arm/hand, but the docs tell me that could be any number of things possibly/probably not related to aps. My platelets have tended to be borderline low (can be a marker in 20 - 30 percent of aps patients), but never alarming. And the doc says that my lowish platelets could be due to any other number of factors.

So, enjoy the rest of your pregnancy. I don;t know if your ob/gyn wants to put you on heparin after the delivery...my hematologist asked me if I want to get pregnant again (I don't!), and said that if I did, that I would be on heparin for the six weeks after a birth. But hopefully no pregnancies here!

All the best! Enjoy.

Hi,
I have had APS for 10 years now so Im pretty knowlegable about this disease. I can tell you that it is a mis-understood disease by many dr.s and alot of them are clueless about all the issues/problems it can cause a person as well as the proper treatments for it. My experience has been that hematologists know the least about this disease which is pretty scary. I see a rheumatologist. He is the one who diagnosed me when I was very sick from it.

Here is what I can tell you. This disease affects everyone differently. Some people have the anti-bodies and never have any problems from it. Some women only miscarry from it and have no further problems, and some people constantly clot from it and have to be on medication forever. I am in the minority where I have never clotted but am extremely sick from it. It affects every part of my body and causes me severe inflamation and over all illness which I have to be on several immuno suppressants for (as well as aspirin/plavix). I feel like Im dying when I am in a flare. You are lucky to know that you have this now because A. you can help prevent any clotting in the future B. Will be aware that if you start to have any symptoms or feel sick you already know what is most likely causing it and can see a rheumatologist immediately. APS does not only cause clotting episodes. It can have almost identical symptoms as lupus. It can cause flare ups and stress on our bodies can trigger flaring. There is so much info I could give you about it. The good news is that there are medications that can help us. You should be on aspirin for life and also take folic acid. Most importantly though, remember you may NEVER have any major problems from it other then pregnancy. You can protect yourself now before anything bad happens.

NEVER take immune boosting supplements. This can trigger an auto-immune response. You may eventually want to find a rheumatologist who is knowlegable about aps. Be on the lookout for any symptoms so that you have a dr. you can go to if this ever happens. Have copies of all your blood work on hand and if you have anymore questions you can email me anytime. My toddler is calling me so I have to run..Sorry this may sound like a jumbled mess. Anyone who is sick from APS or has clotted, I know of a wonderful support group that I can pass on to you. Knowlege is power in regards to this disease. Im here for anyone that needs help/advice. Not everything you read on the internet is correct in regards to this disease either.