Anyone with Lupus or Antiphospholipid antibody syndrome?

[littlefishygg]

I have just found out that I am aPL positive as part of my lupus and that I am at a greatly increased risk of miscarriage (although at 26 weeks I am hopefully past that worry), pre-eclampsia, IUGR and preterm labour.

I'm so worried, I haven't had any issues with this pregnancy so far but I haven't been to see the specialist about this yet, my appointment is next week.

But does anyone know anymore, or going through this as well?

 

[petitpas]

Hi littlefish, I have never tested positive for antiphospholipid syndrome but some of my doctors are convinced I still have it
I'm on the right meds anyway. The golden standard is to treat with low-dose aspirin and low molecular weight heparin injections (it sounds scary but you learn to administer them yourself and you get used to it pretty quickly, I promise).
It's great that you've made it this far without worrying. The meds should help minimise the risks as you continue. I hope all goes well for you and your baby.

 

[Chris77]

Hi hun. I have Lupus and on Plaquenil. I was only diagnosed with it about 3 months ago, so I don't know how long I've had it. But my first pregnancy was smooth sailing.

From what I understand, preeclampsia and IUGR is rare with Lupus and your risk of miscarriage is only slightly increased (according to my doctors), but you will need more frequent monitoring.

 

[Future Mama]

I was diagnosed with antiphospholipid antibody syndrome a couple weeks before finding out I was pregnant with this baby due to multiple early miscarriages. I have been giving myself Lovenox injections since I was about 4 wks pregnant and taking a baby aspirin daily. I see both my regular OB for an NST and a perinatologist for an ultrasound every week as of a couple weeks ago to monitor the baby's growth. They also check that the baby is moving enough and practicing breathing because I was told that if he isn't it could indicate a problem and I would be delivered immediately. I was told that the normal risk for stillbirth for a healthy woman is 6/1000, with our syndrome it goes up to 20-30/1000 but with twice weekly monitoring it goes down to less than 1/1000. Basically all the checks I'm having done will catch something wrong with the baby before anything bad happens. Is your dr going to be seeing you more often once you get to 30-32 weeks? I am also not allowed to go past 39 weeks, but was told that once I get to 36 weeks if my blood pressure is elevated at all I will be induced immediately--in my case this is what they're expecting as I had mild pre-eclampsia with my daughter at 37 weeks and was induced at that time. Good luck with everything, I think that as long as you're being closely monitored everything will be just fine!

 

[littlefishygg]

I have now seen my consultant. Because I have gotten so far into my pregnancy without any issues they have decided not to put me on any medication, they did a growth scan at 28 weeks and he measured perfectly for his gestation so I have another scan at 32/33 weeks to check he is still growing well. I am also at a high risk of pre-e and my maternal aunt also had it which caused a stroke in her so they were already concerned about it so I have to pop into my GP every 2 weeks to get my blood pressure and urine checked but my consultant seems optimistic that I should get to at least 36 weeks so I am feeling a lot more confident

 

[petitpas]

Are you taking low dose aspirin at least? That's supposed to help prevent pre-eclampsia. I am on it until 36w and it is quite common for women to take during pregnancy.

It's good that they'll be keeping a close eye on you and your baby

 

[littlefishygg]

Are you taking low dose aspirin at least? That's supposed to help prevent pre-eclampsia. I am on it until 36w and it is quite common for women to take during pregnancy.

It's good that they'll be keeping a close eye on you and your baby

I havne't been told to take it, I'll do some research and talk to my ob when I see her again

 

[petitpas]

Well, you really do have youth on your side so maybe that's why your doctor is happy to continue as is