Keri

  Hi there,...I can share what I have learned about lupus and pregnancy. As you may already know. People who have Lupus are born with it. It's not something that you "get."  My mom was born with Lupus, However, didn't know that it was lying dormant in her system.  Her pregnancy with me,.. triggered her Lupus. At the time she was 21.  When I became 14 years old Lupus came out like a monster with me.  I have a rare condition which is devastating. Pyoderma Gangrenosum. If you want you can look it up, feel free.  It's large wound lesions that can take up to one year to heal. Your doctors are giving you two different and opposite opinions.  Both,.. could be true, or not.  Hormonal changes are one of the biggest triggers for Lupus in my opinion. Pregnancy being one of them. 

Dr's can be a little wishy washy sometimes. That's only because Lupus is a very unpredictable disease. It does what it wants when it wants to. Without rhyme or reason.  If you have what may be a mild case of Lupus,  pregnancy could make things worse for you.  Or you could even pass along Lupus to your child. I'm living proof of that.  

If you really want to have a baby. Chance are you will be fine. I've done a few thing that doctors did not want me to do, and NOTHING bad happened because of it.  Although I know my body and my Lupus very well, better than any doctor could possibly know.  Keep in mind doctors are very much still learning about Lupus and us patients are still educating them. No two cases are alike when it comes to lupus.   I say, GO FOR IT!!!..LOL and try not to let lupus dictate your life.  I don't have any kids, but would have if it weren't for other circumstances. I hope this helps. 

28 months ago

Lilykat

In some lupus patients, pregnancy triggers a big flare. In other lupus patients, pregnancy sends the lupus into remission. No two lupus patients are exactly the same. It's a crazy disease. Any doctor worth his degree will tell you that planning a baby when you have an illness like lupus is the smartest, safest thing to do. With all the medications we are on, the doctors have to get you off of them first. Secondly, they have to be sure that your body is not in a flare because even if you feel "normal" the inside of your body might be at war with itself. That happened to me. I felt great! and my lupus was very active on the inside. That's also why blood tests are so important.

I was pregnant last year. It was not a planned pregnancy, but the baby was wanted so very much! I stopped all the unsafe medications and followed my doctors' instructions to the letter. I went to all my check-ups and I was so happy. I hadn't thought that I could get pregnant since I had had Cytoxan a few years ago. But there I was. Dreaming and hopeful and worried. And as it turned out...it would have been twins. But I had a miscarriage. I lost them. The Ob/Gyn said over and over that it wasn't my fault. That these things happen. But he couldn't say for sure why I had lost my babies. If it was the Lupus, or the medications I was on when I got pregnant, or if there was just something wrong and my body knew it and "fixed" it. The loss was devastating and the depression that followed was overwhelming.

I am now on a medication that would harm any baby, so I got an IUD to prevent that from happening. But as soon as it is safe again, I will plan it with my doctors and my partner and we will try again. That hope makes me smile. Having Lupus does NOT mean that we cannot have children. Perhaps lupus can he passed on from mother to child, but my own mother does not have lupus and I know several other people that are the only ones in their family with the disease. So I'm not afraid that I could pass this on to my own children.

Good luck with your own plans!

27 months ago

Melissa

When I was pregnant with both of my kids my Lupus did alot better. The drs kept a close eye on me but as far as my lupus went I didn't have any problems with it until about a year after my kids were born then I started going back into my flare ups. I know that everyone is different but my body for some reason did better while I was pregnant.. The Dr told me he thought it was the way my body did with all the hormones.. Just talk to your Dr... 

22 months ago

Dawn

My understanding is not that you're "born" with Lupus - but that it is genetically linked.  You're born with the POTENTIAL for Lupus - but in a set of identical twins, one may get it and one may not.  (Just to clarify.  I realize that is not the topic of this thread.)  I just read a book called "the AutoImmune epidemic."  The most current theory is that all of the chemicals we are constantly exposed to on a regular basis are causing our immune systems to be in a constant state of activity.  They don't know what to attack anymore - which is why autoimmune diseases are on the rise.  And yes, if you have family members with other AI diseases, you are at a higher risk than others.  The thing is now, almost everyone has SOME form of AID - RA, Sjogrens, Gout, Lupus, eczema, etc.  

Back to the point - I just found out I am pregnant and I'm terrified.  They took me off plaquenil, which has never ended well for me in the past.  I have also heard horror stories of Lupus patients suffering multiple miscarriages as the result of the immune system attacking the baby as a "foreign" object.  Ugh.  Ultrasound 4/26!  Wish us luck!

22 months ago