[SylviaH]

Hi,
I am 35 years old and have been living with active lupus for the last five years. I have very high (off the scale) double stranded anti dna, yet fortunately no organ involvement. My main syntom is arthritis.
I am considering pregnancy and I am wondering if anyone with similar SLE case has any experience with pregnancy. One of my main concerns is that my disease will change with preganancy and that it may trigger organ involvment.

I would be very thankful if someone with similar case could share their story.

Gratefully,
Sylvia

 

[Clare.T]

Welcome to the forum Sylvia
It sounds as if your lupus isn't too well controlled and it is important to be as stable as possible before conceiving.

As far as I know ( which might not be very far) the presence of anti ds DNA antibodies doesn't necessarily mean disease will worsen during pregnancy. I don't think there's any way of telling how lupus will be affected by pregnancy in any particular case. Some people feel much better and some flare.

If there are anti phospholipids present and if there are anti Ro antibodies special care will be needed but lupus pregnancies are high risk anyway. If there is no organ involvement such as kidney or lungs or blood or history of strokes or thrombosis, lupus pregnancy is less risky. They need to be planned too, so the best thing is to discuss your plans with your rheumatologist and maybe a perinatologist. They can work with you to get as stable as possible and consider your medications. Some are OK in pregnancy if needed, such as Plaquenil, Imuran and Prednisone. Others like Methotrexate and Cellcept are advised against and care has to be taken with NSAIDs.

This is so variable and individual that really another person's experience isn't good enough for decision making - you need an expert's view with years of clinical experience. But these days the rate of successful lupus pregnancies compares very favourably with healthy pregnancies. Many women here have had no problems at all, or very few and not serious.

Good Luck !
Clare

 

[Maia]

It's impossible to tell how a pregnancy may affect your lupus, during or after the pregnancy. I'm not aware of any research results with respect to your particular question.... The good news though, is that if your lupus has not already affected your organs after 5 years time, then it is less likely to due so in the future. Most people with organ involvement will get that within the first 5 years of diagnosis; in fact the overwhelming majority that will get organ involvement will get it in the first 5 years.

Hope this helps - definitely this is something to ask your doctor about though...

 

[puffin77]

I am 32 years old and my ds dna antibodies are always off the scale. My kidneys are severely attacked by SLE and my kidney function is frequently compromised, but well controlled.
I had a baby in 2007 when Lupus was on remmission for about 1 year before getting pregnant.
It was the kidney function that affected my pregnancy. Not sure what the antibody effect is, other than show disease activity...?
My advice is to speak to your dr and investigate on whether you have been / are on a quiet lupus stage for more than 6m (not compared to other people, just yourself and your regural blood results). If that is the case, just do as the dr says and with the help of a "high risk pregnancy" obstretrician you'll be just fine....
It is possible that your Lupus may improve when pregnant, like it did with me...
Good luck.

 

[Katharine]

Hello Puffin and welcome

I'm not sure if you will get a reply to your post as this is a very old thread.

Hope to see you around elsewhere on the forum

Katharine