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Posted 10/19/2007 10:31 PM (GMT 0)

My husband & I have gone back & forth on the topic of pregnancy and Lupus.  I am so fearful that there is a risk I could pass this condition onto another person, but on the flip side my 2nd opinion Rhumy says there is no reason that I could not have a normal pregnancy.  I am 29 & finally had to go off of my estrogen birth control pills.  Given my fears, I was considering having a hysterectomy - but that does seem drastic given my age.  Any feedback on pregnancy experiences while having Lupus would be greatly appreciated. :-)

Posted 10/19/2007 11:01 PM (GMT 0)
Hi Jenny:

First off welcome to our forum. I've had lupus for 19 years and had a child during this time. My pregnancy was fairly uncomplicated. I was admitted only once for some difficulties with my kidneys. I had a healthy 6 pound baby girl.

That being said, my daughter was born with Autism, she's a high functioning one and I spent the first 7 years of her life devoted to getting her connected to the world. She's got a positive ANA of 1:640 and gets rashes and muscle pain. Did my lupus do this to hear I don't know. The peds rheumy said that mothers who have AI diseases often pass on a positive ANA to our children. Would I change things, "NO" I love my daughter more than life. I have to admit that the stress and energy it took to raise her made my lupus flare. There are about 6 other members here who have kids that have Autism, it would be interesting if a research study were to be done on the connection of lupus and autism in our kids.

Would I recommend you get a hysterectomy just to avoid having a child, I can't say yes or no to that question. Deciding to have a child is a huge responsibility and you need to consider being a Mom is a life time job, and the stress and good things will affect your lupus. I'd discuss this with your hubby and I hope that you'll be able to make the best choice for you both. I'm more than happy to answer any questions you may have about my pregnancy or how I think my lupus affected my daughter.

I've had a hysterectomy and it was the best thing I ever did, but that's due to I was having severe "female" issues. I have to say now that my daughter is 14 I'm at my sickest. My daughter has no memory of me being well. Since 2005 I've become seriously ill. Not only is my lupus bad, but I was on cytoxan to treat my lupus and I developed a rare blood cancer. So now I've got lupus and MDS feeding off of each other. I'm going to need a bone marrow transplant if I hope to live past the age of 48 or so. My oncologist is saying I've got a max of 5 more years to live or less. It's all in the hands of God, since I see myself going down hill pretty fast, I think I'll be lucky if I live the next 2 1/2 to 3 years. I wouldn't change having my daughter Nikita as far as her disability. However, I've deprived my daughter of having a mother that will grow old and be able to enjoy her later in life. I've given my daughter only memories of me being sick and in bed. Those things I regret but I wouldn't change the fact I chose to have her. I hope this helps you some.

Take care,
Barbara
Posted 10/19/2007 11:17 PM (GMT 0)
Barbara, Thank you so much for those encouraging words. I have always wanted children, but have let Lupus hold me back. I'm so sorry to hear how sick you are these days. I'm certain your daughter thinks of you as the 'best mom', despite being in bed sick on occasion. Take care of yourself! :) When you were pregnant, did you have to make drastic changes to your meds? I'm doing pretty well on mine now & don't like to change them frequently.
Posted 10/19/2007 11:29 PM (GMT 0)
Hi Jenny:

Other than taking plaquenil and a heart medication I wasn't on medication during my pregnancy. I have to admit I stopped all medications until I was in my third trimester. I didn't take any medications during the first two. I stopped the plaquenil month 2 prior to getting pregnant. I was more stiff and sore while off those medications. I did restart my once I reached my 36th week. I breast fed her and I don't know how much of the medication was passed on to her.

I have to say I'm in bed more than once in awhile. I've had 8 admissions to the hospital this year for a total of 57 days so far this year in the hospital alone. However, though I know she loves me and we play games often in my bed.

Hope this helps you some.

Good luck,
Barbara
Posted 10/22/2007 10:39 PM (GMT 0)

Jenny,

         Hi Jenny, my name is Erin, I'm 23 years old and pregnant with my second child. Like you, I too struggled with the decision of whether or not to have children. Obviouly for me my decision was yes. I went back and forth 1000 times weighing the pros and cons of doing so.In the end I decided that I did want children some day. You can't forsee the future and what might happen. Yes maybe your child will end up with Lupus but maybe not. There are 1,000's of healthy couples that have sick children all the time, and 1000's of unhealthy couples that have perfectly healthy children. You just never know what will happen. I have lupus but neither of my parents does, and neither does my twin brother. Anyway I was told by my Ob that I probably shouldn't get pregnant and that I probably wouldn't get pregnant. Well, for me having my first was a total suprise. I was 19 and my boyfriend and I accidently got pregnant. I was so freaked out, I didn't know what I was going to do, should I have it? or not? Well, again, obviously I did, not that I wanted to have an abortion, but I just didn't know how my body would respond to pregnancy. We both felt blessed that I even got pregnant, so we couldn't giving up our only chance to be pregnant possibly. Here's a good tip, If you do get pregnant, try to conceive while you are in remission. I got pregnant while in remission both times and I think that made a huge difference.

        Well, my first pregnancy went pretty smoothly. I saw my regular Ob/gyn and a high risk specialist. They kept a close eye on me and the baby, constantly doing measurements on the baby to make sure she was growing normally and that everything was where it is suppose to be. At 30 weeks I started having N.S.T.'s done (non stress tests). They hook you up to a monitor and check your babies heartrate and see if you are having any contractions. At one point I started having contractions, around 33 weeks. They put me on medication to help stop them and put me on bedrest. It worked and she was born only 9 days early, a healthy baby girl weighing 7 lbs. 2 oz. and 19 1/4 in. long. She will be turning 4 in about 3 weeks and has never had any complications.

       This pregnancy has been a bit more rough. I got pregnant by mistake, again, but was told that having another baby would be nearly impossible. After having my daughter my uterus shifted, making my chances of getting pregnant again very low. But to everyone's suprise, boom, I was pregnant again. I started contracting at 20 weeks and was put on medication and bedrest again. I went to the hospital and found out I had a U.T.I. which was causing the contractions. I was put on medication to make it go away. We thought that it was gone until again I began contracting. I went back to the hospital and was told that the U.T.I. came back, stronger this time and I was put on medication again. The meds didn't work and I ended up back in the hospital and was put on a stonger medicine and given shots while there. This time we thought it was gone for sure, but low and behold I went back to the hospital this past Friday, having been off the antibiotics for only a week, and found out the U.T.I. was back and was stronger than ever. This time I was admitted and put on I.V. antibiotics. They kept me there for 3 days and hopefully this time it's gone for good. I'm 33 weeks pregnant now and trying to make it just one more week to 34, my "safe zone". Luckily the baby, a boy, never had any reaction to my having an infection. He's growing normally and is doing just great. So other than these stupid infections my pregnancy has actually gone pretty well. Well, I hope that this helps you in your decision, keep us all posted.

                                                                      Erin

Posted 10/23/2007 7:02 AM (GMT 0)
I am 30 and pregnant. I have a few genetic issues to worry about for my child, but those can now be found early enough to prevent any tragedies by a simple special diet for the child. I was abused as a child and it caused some damage to my cervix thus I have a harder time than most. This is my first pregnancy with my lupus under control. In the past I was in full flare when I was pregnant and had many problems- I was only dxed in spring 2005. I am in remission now and the early problems I usually have (outside of bad nausea) have not appeared. This is my 5th baby. The previously mentioned genetic issues were not caught until 2 of my babies had died as a result- heck there wasn't even a test for the problems until 2 years after the second death. I have to say that the lupus was not my fear getting pregnant. I know my family is heavy toward AI diseases, but I look at my daughters 12 10/12 and 10 and realize that outside of a few signs that say we need to watch my 12 10/12 year old closely that I am lucky. I believe the chances of passing it on if it doesn't run hot and heavy in your family is a few percent and even that they aren't sure it is really passed on. See environmental factors can trigger AI diseases as can certain viruses. I will have a 50/50 chance of passing on a gene that if activated means the child has a higher than normal risk (25% was what I was told by geneticist) of eventually developing an AI disease (like lupus) BUT it is only if the gene is activated. If it lies dormant the chances are about the same as a normal person. Besides if lupus is caught early on a lot of the really bad stuff can usually be avoided.

Do not let lupus scare you into not having kids. BUT as your rheumy about the timing of the pregnancy. If you need to wait a little longer to control the disease or change meds around I suggest considering a copper IUD- I used one for a year while I got things ready to try again. I was told never to take artificial hormones again because it drives my immune system nut- the ones in BC pills, shots, etc... can cause antibodies to develop depending on the person. It made my lupus much worse. I say consult with a few OB docs- find one whose ideas on lupus aren't 30 years out of date. Then get your heart, lungs, kidneys, and liver checked out by specialists just to be positive all is well. Have your husband come to a visit where the risks are explained so he knows what to expect. It will make him feel better in the long run. Good luck.
Posted 10/23/2007 7:35 PM (GMT 0)
My mom had most of the same problems I am having now and I hope she wouldn't have changed having me if she had known what the future had in store for me. Yes it is very hard at times but I think it has made me the person I am today. I have had to go through 12 pregnancies to get my little survivor but that was found to be due to my hughes. The first 10 were all lost at or before 9 weeks and the 11th was an ectopic and the 1st after the clotting disorder dx. Then Came my son the only meds I was on during that preg. was blood thinners and prenatals. He is a very healthy almost 5 year old boy and decided to come out one day before the planned induction. I also have 5 brothers that are all healthy. If I didn't have PCOS and was ovulating I would love to be pregnant again. I used to dream about having a huge family but now I'll take what I am given. I am in bed virtually daily but my son and I have come up with games and such that help us try to keep a sense of a normal life.
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