I have a question for the ladies. I have Hughes Syndrome and I am on warfarin. So how does it work if you want to have a kid?

[MJPrachyl]

[Lure2]

Hi there. I can not answer your question. I hope someone else can.

Best wishes from Kerstin in Stockholm

[Maria39]

You can take warfarin when you are pregnant. You have to takw heparin and aspirin at the same time. Talk with your GP or specialist and he/she can guide you better.

[tassie in reply to Maria39]

I think Maria meant to say that you can't take warfarin when pregnant as it crosses the placenta. When pregnant and probably whilst trying to conceive you should be put on low molecular weight heparin and aspirin.

[Lure2]

Hi, After this answer above i want to ask you if you have an "APS-doctor".? I mean a doctor that are specialized in APS and who undestands your illness.

I would suggest that you do not ask your gynaecologist about this. It is important you talk to someone who understands this illness. Most doctors do not..

Hope to have helped just a Little. Kerstin

[MJPrachyl]

No I do not have an APS specialist. I live in the states. My Obgyn is the one who diagnosed me with APS during my last pregnancy. But she doesnt know much about it. I am just wondering for a possible sibling in the future.

[MaryF Administrator in reply to MJPrachyl]

Please tell us where in the USA you are, as other members from the USA on this forum will have more localized knowledge for you, in the mean time there are some names on here to contact for possible advice: apsaction.org/

MaryF

[Lure2]

You have a very important question regarding an APS-doctor in the US,

Could you please wait till tomorrow when the other Administrators (today administrating Patiens Day in London)

are here.

Best wishes for a sibling in the future. Kerstin in Stockholm

[MaryF Administrator in reply to Lure2]

Thank you for your help yesterday Kerstin, I appreciated the eye you were keeping. MaryF

[Lure2 in reply to MaryF]

Hope I did not say wrong things! Thank you Mary. Hope you are not too tired. I am going attend a big party on Saturday so I will rest and not write so much.

Kerstin

[Maria39]

Hi MJPrachil,

When I was pregnant, 5 times, I had to stop warfarin before 6 weeks, that's what my obs told me to do. I was on framing 60mg twice a day and 75mg of aspirin. My rheumatologist, here in St Thomas, London, told me the same. You can't take warfarin when you are pregnant (sorry about the first message, I meant to say can't not can).

[MJPrachyl]

What about when we decide to start trying?

[GinaD in reply to MJPrachyl]

I was diagnosed after we had 2children. But I do see a high risk OB/GYN who knows and treats APS regularly for my yearly check ups. My theory is that if West Virginia has a high risk OB/GYN who treats APS, then every place in the US should have access to one. My advice? Find out who the designated high risk pregnancy OB/GYNs are in your area, then try to get into the practice so you can profit from that care from the planning/trying stage.

[Sal0712]

I was told by a consultant, that if planning to have a baby you should be taken off warfarin and start injecting clexane (or a drug that does what clexane does). This should start as soon as you start trying, and carry on throughout the whole pregnancy, so for 9 months + a couple of weeks. Not sure if the info was right as it sometimes takes a while to conceive. I had my child before being diagnosed with APS and didn't have any problems, other than a couple of faints, plus it only took me two weeks to get pregnant. It's always best to see your GP or specialist and push them to find the answers. It's their job to find out the facts, and maybe learn a few things themselves while doing so!