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Has anyone had lupus and tried getting pregnant?

427 Views 4 Replies 4 Participants Last post by  alisiajo
Just wondering if anyone has had lupus while trying to get pregnant? Also if so did you need any medication?
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When I had my children I didn't know what was wrong although clearly something was. I did have problems as a result but it was still worth it.
x Lola
Hi Alisia,

The issue of trying for a baby is a big one for lots of us with lupus. Logical really when you think that the main group of people who get lupus is young women - just the group who also have babies.

Many years ago doctores advised women with lupus not to get pregnant, but we now know that with good medical care women with lupus can get pregnant and have healthy babies.

Pregnancy with lupus remains a 'high risk' situation. That means that there are potentially things that can go wrong, so being seen more often by an obstetrician is advisable. It is also a good idea that pregnancies are planned, not accidental. That way you can check with your rheumatologist and obstetrician before conception what you need to do about medications and where you need to go once you do get pregnant.

There are some medicines that absolutely cannot be used during pregnancy. These are methotrexate (which will cause a miscarrige if you are on it when concieving), and cyclophosphamide (which causes birth defects).
The lupus medications that have the best safety record in pregnancy are prednisolone, plaquenil and azathioprine (in that order of preference).

The very best case scenario is if someone with lupus is in remission - ie has no symptoms currently and is taking no medications. For lots of us though that is just wishful thinking. The second best option then is getting the lupus as well controled as possible with whatever medications necessary (with the exceptions being those that we know will seriously damage the baby). It is less risk to the baby to have exposure to drugs like plaquenil or pred, that to be carried in a mum who is flaring.

To decide what you personally should do, you should speak to your rheumatologist, and get an obstetrician who specialises in high risk women, and have a pre conception consultation.

There are a few issues that should be looked at specifically. The first one is to be screend for SSA and SSB antibodies - also called anti Ro and anti La. These antibodies are associated with a condition in the baby called neonatal lupus. If you have them you can still get pregnant, but the doctors will keep an extra close eye on the baby to check for heart problems.
The second issue is APS - anti phospholipid syndrome. If you have this, it can cause miscarriages and increase the risk of a smaller than average baby, pre-eclampsia, HELLP and placental abruption, and stillbirth. The treatment is asprin and heparin. This helps improve the chance of a live baby from about 10% to about 70%.

The latest thinking is that for women who do not have APS, and who's lupus has not damaged their organs (especially the kidneys), the chances of having a normal pregnany are pretty much as good as those who do not have lupus. For those who have lupus and APS, getting the right treatment also helps a lot in improving the chance of success.

So, that is pretty good news:wink2:

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About 2.5 years after being diagnosed with lupus I decided to try for a baby. I had been off prednisone for 3 months, and had been feeling well for about 4 months at that time. So a little less than the 6 months they recommend before trying for a baby but it all worked out for me in the end. I have the APS antibodies, but am not diagnosed with APS. Because of this I continued to take my Plaquenil during the pregnancy (I chose to go off for just a month or two early on though) and also took a low dose aspirin a day.

Pregnancy agreed with me and I felt 100% healthy during my pregnancy. I would call it a remission. This happens to 25-33% of SLE patients during pregnancy (the other 1/3 experience the same level symptoms and the last 1/3 or so get worse).

I had no pregnancy complications but was followed by a high risk OB team and had more frequent visits, more frequent scans, and non-stress tests for the last 2 months of the pregnancy.

For most women with SLE , I would have to say that the bigger consideration is life AFTER baby and how much help you have ;) I think nearly 100% of us mothers will say they are worth it all of course, but it is a major investment of time, money, energy, and it is pretty likely you will flare worse after baby is here & if you're like me you will catch every illness she catches! But without a doubt, worth everything and then some for me.

Good luck to you.
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Well i set up an appt for december 1st. I guess i'm mostly nervous about not being able to conceive and the after part. Getting sick and not being able to take care of the baby. I also worry about getting sick while pregnant because of the stress and causing a miss carrige. I dont know how i would recover knowing my illness killed my baby. Also i worry about needing to take fertility medicine and ending up with 8 babies or something.
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