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Thread: long term effects of pregnancy

  1. #1
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    Default long term effects of pregnancy

    I really need to hear from people about this as it is an absolute endless struggle for me.

    I am 31 years old, had Lupus for 13 years. I have ALWAYS wanted to be a Mom my whole life. Had a miscarriage years ago but not antiphospholipid antibody.

    I have been told by docs and patients over the years that having a baby when you have Lupus can have devistating long-term effects to your disease and actually speed it up. I want to hear from as many people as possible and really figure this out.

    What has it done to you? What research do you know of? What are the risks to you and to the baby?

    I would really appreciate everyone's input.
    Love, Laugh and Live Hard...

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    JenHa55

    I have never had children myself... but my sister has two healthy wonderful boys who are now 16 and 18 yrs of age. She had five miscarriages. Then my mother passed away suddenly. That's when we found out that my mom had lupus. My sister was tested and came back with a very strong YES for the lupus and with doctor's guidence had two beautiful healthy boys. I'm not saying that having children put her into remission. But she certainly didn't suffer from it.

    My mother was very healthy right up untill her late 40's. Then like me she started showing symptoms...but no body caught hers...

    I cant speak for other peoples experiances...but she has been in remission from the lupus for about 10 years now. I think she's doing pretty darned well, don't you? Every person is different with lupus.

    I tested negative back then...but now...well I showing signs and symptoms and my tests are coming back iffy. So it's waite and see. Listen to your heart. And yes listen to the advice of your doctors. Dont be afraid to ask for a second opinion.

    I'll be interested to read what the other member's experiences are.

    Hope you find the answers you are looking for
    Oh look ... a cookie

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    I really appreciate your response and would appreciate anybody else's opinion and/or experience on this topic.

    It is a huge decision for us and right now we are researching like crazy but all the medical reports are great etc but what I would really like to know is real life experiences from people. I am part of a small support group but there are a very limited amount of mothers in the group and most got Lupus AFTER they had their child, I'm trying to figure out if I can have one post-diagnosis etc...
    Love, Laugh and Live Hard...

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    Hi JenHa55,

    There is always Adoption if you cannot have children. It's an awesome alternative.

    Take care,

    Faith 8)

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    I have had many children-8 living, and 3 in heaven. I have the antiphospholipid (sorry bad spelling). I had a clot to the lungs with my 6th living child. We both lived. I was not as lucky with my last one. he was full term when he died. Also, 2 miscairages

    I have only been diagnosed since October, but we can look back and see that I had this problem for years. My rheumy told me that based on the problems that I had with the latter 4 children (2 of which developed serious complications) and my blood work he felt that I probably had the problems for many years. I went to doctors, they just never took the right tests.

    I have a friend who had one child. It was an extremely hard pregnancy, but her son was fine.

    Also, as Faith said , there is always adoption. You and your spouse might be interested in that option.
    We took in 2 children 4 years ago. There are many who need loving homes.

    Hugs,

    Karen
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    Sounds quite challenging. Were you being treated at all throuhgout the pregnancies, probably not if they didn't know about it. I have a negative antiphospholipid antibody so I'm hoping that will make a difference.

    We are going to my rheumy on April 8th and then to medical genetics and stuff to get lots of answers.

    We would really prefer to have a child of our own if at all possible so we'd like to go that route. Everyone has their own preference and I am not against adoption at all but we really want a child that is half him and half me if we can make it happen.

    See what happens but please keep the responses coming, I appreciate hearing the good AND bad scenarios so that we make a smart decision!
    Love, Laugh and Live Hard...

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    I totally understand you wanting to carry your own child. It can and has been done. With God's help, you will be able to have one. There are many thinks that can be done to help lupies have a child.

    Go for it,

    Karen
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    Default In the same boat

    We are also trying to have a baby. Have you spoken to your dr. about it? I did before I started trying. The dr. changed a few of my meds to a more baby friendly one. I haven't had Lupus symptoms for years, but I am on very low dose of prednisone, imuran, plaquenil, and high blood pressures meds. Once I get pregnant, the dr. will take me off a few more drugs, but he said I will be closely monitored. Unfortuately, that was almost 2 years ago when I talked to him and I'm not pregnant yet. I am about start invitro. Good luck to you! I know there are lots of women with lupus that have had children.

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    I am not sure about the long-term effects. But I am currently 7 months pregnant and have had lupus for 8 years. So far the lupus hasn't caused any problems in the pregnancy.(knock on wood) In fact, my rheumy told me that he doesn't need to see until after the delivery! However, I am still considered to be very high risk so I go to a high risk obgyn every two weeks. Next month I will start with weekly visits. The thing about lupus is that everyone's experience is really different. I was really worried about the effects of pregnancy so I met with 4 different doctors before I started to try. They all gave me the thumbs up signal because I hadn't flared in the past year and all of my bloodwork looked fine. I got pregnant the first month we started trying and besides from God awful morning sickness that had me on bedrest for 2 months(which concidentially, had nothing to do with Lupus), I haven't had anything physically wrong with me. So my advise would be to talk with your doctors but keep in mind that it really is a crap shoot. No one really knows how YOU will respond to pregnancy.

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    Hi Ladies,

    I happened upon your post and felt the need to share my Pregnancy story.

    I posted this back in March when I first joined this Forum, but all my posts were lost when I had to sign up again after the site was down.

    I have been through two successful pregnancies with Lupus and have two "miracle" children. A Son, who is 16 now, and a Daughter, 12. They are my Joy in this life!!

    My story goes something like this.......

    I was diagnosed with Lupus at age 18 and had a very severe case from the start. I had to go on Prednisone and Imuran right away. My childhood family Doctor that diagnosed me, told me I shouldn't try to have children because it was too dangerous with this disease. (That was 27 years ago) I was absolutely devastated! I was 18, just starting my life and looking forward to a husband, marriage, a family someday. I remember I cried for days and spent time in a deep depression.

    My first 5 years with Lupus, I was very sick. I had to be on high doses of Prednisone and lost count how many times I was in the hospital. Actually, I chose not to count any more after the first fifty. After the roughest part, things settled down and I went into a remission of sorts. Things were pretty quiet for awhile. I was able to work full time and handle the stress. My husband and I had talked about the risks of a pregnancy and had pretty much decided that it would be best if I didn't risk it with Lupus. Besides I was pretty sure I couldn't even get pregnant because I wasn't healthy.

    That's when our birth control failed!! I discovered that while we were busy making our plans, God has His own. I was pregnant!! My feelings, and my husbands, ran the gamut. Everything from sheer elation and excitement to sheer terror and everything in between.

    My Immunologist (Lupus doc) was even more surprised than us. He immediately referred me to a High Risk Maternal/Fetal Specialist (Perinatologist) and stopped my Imuran. At that time, 16 years ago, there weren't enough studies on the effects of Imuran on the fetus. It had been used mainly as a anti-rejection med for transplant patients up till then. My Immunologist and High Risk OB kept in close touch and worked together thru both of my pregnancies. This was a blessing.

    My first pregnancy was pretty uneventful. My Lupus stayed quiet. I kept working full time. With about a month to go, my blood pressure began to spike, so my OB induced me. My son was born 4 weeks early and weighed 5lbs. 8oz. He was perfect! (in my opinion) I was overjoyed! I was a Mommy! I couldn't believe it!

    My Lupus stayed very quiet postpartum, but I did develop difficult postpartum depression. Fortunately, my Doc found a med that worked really well with me.

    Now fastforward about 4 years later. I now needed to have both of my hips replaced and had been putting it off because I was afraid to have such a major surgery. I was living in excruciating pain and taking 2 narcotics round the clock. I finally got up the nerve to schedule the first surgery and was banking my own blood for the surgery, when I became very nauseated and weak. My docs thought I was might be anemic, so they started running tests and discovered I was pregnant!! Again!

    Hip surgery was cancelled. I immediately got myself right in with my same High Risk OB, and she sent me off to the Pain Management Clinic. They helped me get off the oral narcotics so my baby wouldn't be born with withdrawals, but I had to have what's called a 'Continuous Epidural' implanted in my lower spine that fed intravenous Morphine right to my spine and hips, so baby wouldn't get any.

    This made for many challenges thru the pregnancy. There was a high risk of infection at the IV site, so I had to have a visiting Home Health OB Nurse come to my home once a week to check out the IV and change my dressing. I remember my Docs didn't want me to take a shower or bath thru the pregnancy because my IV site would get wet. They wanted me to sponge bathe for 9 months! I freaked out and asked them how they would like to go without a shower for 9 months. They finally gave in and said I could have a shower once a week, if I was really careful and wrapped from my chest down to my hips in Saran Wrap and adhesive tape and dried my IV site very good afterwards. My husband and I still have a good laugh when we remember standing in the bathroom wrapping me in Saran Wrap. I would stand still, with my arms out, and he would walk around and around me using a whole roll. Then he'd tape me shut, put me in the shower with my IV pack right outside the shower door, and he would sit in the bathroom in case I had any problems. He is the best husband on the planet!! :angel: :multi: Near the end of the pregnancy, we had to use 2 rolls of Saran Wrap cuz baby and I were so big. :lol:

    I also had severe morning sickness throughout the entire pregnancy and couldn't eat. At one point, my OB and my husband were begging me to try to think of something I could keep down. Thru trial and error, we discovered that I could eat Alaskan King Crab (cold), baked potatoes with cheese, and (of all things) Hostess Ho Ho's. Eewwwwww! I had never eaten them before I was pregnant, and I don't know why Ho Ho's, but now I can't walk by them in the grocery store without cringing. Alaskan King Crab is another story. I still LOVE it!!

    The one thing that remained stable throughout the pregnancy was my Lupus. I was even able to get off the Imuran and stay off of it to this day. I believe that having my Lupus in remission and quiet when I conceived both times, was of great benefit to me.

    Anyway, near the end of my pregnancy, my blood pressure spiked again and we induced. My Daughter was born 6 weeks early and weighed 3lbs. 8oz. I was ecstatic!!!! I had a GIRL!! She spent 21 days in the NICU, mostly to gain some weight. She was starving when she came out and ate voraciously from day 1. Unfortunately, right after delivery, I went from Pre-eclampsia to Eclampsia to HELP syndrome, and ended up in the ICU for 3 days. My husband went back and forth from ICU to the NICU. He was the first one to feed and hold our daughter.

    I know that I am here by the grace of God for a reason, and because of the excellent care my Doctors and Nurses gave me at O.H.S.U. (Oregon Health Sciences University). They are wonderful!

    My Lupus has stayed in remission since then. My daughter turned 12 a few weeks ago, and she is my absolute JOY!! I would go thru every bit of it again in a heartbeat for her. She is SO worth it! Both of my children are! They bring me so much joy and happiness. I can't imagine my life without them.

    I did have to change my life a bit after the kids. I just couldn't get a handle on having Lupus, working full time, and trying to be a Mom to 2 kids, so the job had to go. :lol: (Wish it was the Lupus!!) I gave up my work and am now a stay-at-home Mom. I made the decision that my kids needed me to take care of ME first, so I could be there for them. And I truly want to be there for them for a very, very long time. I treasure the time I have with them.

    I hope that my story has been helpful in some way for others, and that this much info hasn't been overwhelming. I struggled with the right words to say that would give HOPE and comfort to others. I hope I have succeeded.

    I hope success (with a pregnancy) and happiness will be yours....
    God Bless!

    Fondly,

    Lori

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