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Your Pregnancy Experiences?

Discussion in 'Living with lupus' started by mooks, Aug 10, 2008.

  1. mooks

    mooks Registered

    Hey I am only 22 so won't be starting a family for a few years yet but I know with lupus you really need to plan these things, especially as I am currently on lots of meds and nasty ones like Methotrexate and I had a miscarriage before I was diagnosed-not sure if this makes me more at risk (although I don't have APS). But looking through various websites there's alot of information-often conflicting-about statistics and what can go wrong and why ect. So I thought it would be best to hear from you guys...So if you wouldnt mind sharing your experiences...whats gone right, whats gone wrong and generally what you know that would be great. Thanks xxxx
  2. Maia

    Maia Registered

    I had a great experience, pregnancy actually put my lupus into a full remission (although I stayed on Plaquenil at a reduced dose). I also stayed on low dose aspirin throughout as I do have the clotting antibodies. Baby was born 1 week late, at a great weight. I had none of the often cited worries that lupus patients are told their are at higher risk of (such as intra uterine growth restriction, gestational diabetes, preterm labor, pre-eclampsia, etc.).

    The biggest risk to a healthy pregnancy in a lupus patient is entering into pregnancy when the lupus is not under control, when you have active lupus nephritis, or when you are on medications harmful to a baby such as methotrexate. You should be tested for the clotting antibodies and know if you have them so that you can take appropriate measures to protect against fetal loss due to clots in the placenta. I think untreated APS while pregnant is likely the biggest cause for problems in pregnant SLE patients.

    Good luck to you... be sure to talk to your doctors, and plan out the pregnancy in advance so you can get off any medications you need to before trying (such as methotrexate of course!).

    Good luck to you - it's not all gloom and doom. Try to remember that and maintain as positive an outlook as you can! :)
  3. cath

    cath Registered

    Hi Mooks,

    I was doubting if I should post - don't want to depress you, but you did ask for good and bad experiences.

    I've APS as well as lupus and am much older than you (36), but for us pregnancy has been so far 100% failures. I've had 6 miscarriages - 3 untreated, 1 molar and 2 APS failures despite treatment.

    Still, statisctically the chances are not too bad that I might one day have a live birth. Even after this many miscarriages the stats for live birth are still around 40%, and I've heard that given enough time and attempts it will eventually 'work' for us.

    If you are sure that you want children, then it is probably realistic to think about the possibility that it won't be easy and leave plenty of reproductive years ahead of you. Of course you can't rush it and have a baby at the wrong time or with the wrong person out of fear either.

    What I mean is - it is good that you are thinking ahead:p

    X C X
  4. cinderashes

    cinderashes cinderashes

    Hi Mooks,

    I also had a good experience with my pregnancy despite a lot of warnings. The decision was made after a lot of discussion and soul searching (both me and my hubby) and I began by speaking to my rheumy and consultants and asking as many people as I could, researching on net etc. I started to eat lots of very healthy foods and was prescribed a high strength folic acid when i asked about this. (I think it was 4mg - the ones in the shops are 0.5 or something, dont quote me but you need to check that out as well) it was only after about 6 months of taking the folic acid, healthy diet, as much exercise as I could manage that we even began trying and much to everyones surprise, conceived naturally within 3 months!

    During pregnancy lupus was in remission but I continued with folic acid until 20 weeks and healthy diet still hasnt stopped and baby is 5 months old now! After birth had some depression and a recurrance of joint pains and hair loss but i guess the joint pain was worsened by having to run round after baby.

    was on plaquenil low dose trhoughout pg and now baby born and breastfeeding finished i have gone back to higher dose. (I was told plaquenil is 'safe' in low doses during pg and breastfeeding) If I had been able to control diabetes better after birth and had not got thrush i would still be breastfeeding but baby is thriving on bottles so am not too concerned.

    Think you are right to start thinking now even though you may not want a family right away. I would certainly consider speaking to your drs about it and asking for advice, it may be a very long, heartbreaking and difficult journey but i wish you all the very best and hope you one day experience the happiness I have been blessed with.

    Ash x
  5. Tazzytnt

    Tazzytnt Registered

    hi mooks
    I am pregnant now in my 7th month I got pregnant unexpectedly but I was in remission and off of all my meds and I have had no problems I have had a great pregnancy. my baby seems to be doing great. And even though I have been under a lot of stress my health has held up. I have lupus and fybro and I was on for almost a whole year methotrexate I thought I was going in to early menopause at on point because of the methotrexate. I was put on the pill to regulate my cycle after the metho and I got pregnant three days after I stopped taking it.

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  6. mooks

    mooks Registered

    hello thanks for your replies, Cath i do appreciate you sharing your experience even though its not a success story yet i really feel for you i hope you get to be a mummy soon. and Tazzy good luck you must be very excited!

    I sat down with my boyfriend last night and had a chat about it and i asked him if he was worried and he said he was worried that we might not have any so now im even more worried because id hate not to give him children! He already puts up with enough from me!

    Would love to hear more stories if anyone else wants to post...

  7. KarolH

    KarolH Registered

    Hi Mooks, and nice to meet you.:wink2:

    I only had one son and he is 17 y/o now.

    I had one miscarriage when my son was 3 at around 12 weeks.

    Even though I loved being pregnant because my hair, skin and nails were just awesome...........I did have a rough pregnancy but I was not dx with Lupus while pregnant.

    I have pre eclampsia
    Protein in my urine
    Toximia..............and the list goes on and on.

    My labor was induced due to the Toximia and my blood pressure issues on top of it.

    I was told I would never get pregnant due to severe recurrent issues with Endometriosis and yet my son is my condom and foam baby.....go figure.:rolleyes:

    God works in mysterious ways.

    Good luck to you.:wink2:
  8. Nutty

    Nutty Registered

    I wasn't diagnosed with Lupus when I had my kids, but I had a history of blood clots. So, for my first child I took heparin injections (preventive dose) every day throughout the pregnancy and until my daughter was 2 months old. Heparin does not cross the placenta. When I had my 2nd child with a different doctor, they said that the risk of clots was after the baby was born. So, I took coumadin after the baby was born because it does not affect your breast milk.

    Cath, I just want to say I'm sorry to hear what you have gone through. My sister has crohn's which is an autoimmune disease as well. She had at least 5 or 6 miscarrages as well. Then when was pregnant again, the doctor gave her hormone shots every week. I don't know exactly what it was, but she had a very healthy baby. Then she got pregant again right away and the doctor said she didn't need the hormone shots. She ended up having 4 boys. So, I know it's hard, but hopefully this will work for you as well.


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