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Good Teratology Info About Taking Elmiron While Pregnant

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  • Good Teratology Info About Taking Elmiron While Pregnant

    Hello,
    Quick summary about my IC journey. I have had IC for about 9 years now and like most of you I've had my fair share of ups and downs with this illness. When I became pregnant 5 months ago, I immediately discontinued taking elmiron to reduce risk with pregnancy believing this was the "right" thing to do. After a few months, my symptoms became unbearable! I was back to urinating 50+ times a day, with horrible nocturia that completely disrupted my sleep pattern, bladder pain daily, and constant fear that I would not make it to the bathroom in time. People at work were constantly commented about my frequent restroom breaks. My life was revolving around my bladder and this was no way to live. I first consulted my OB/GYN about the possibility of resuming elmiron. He assured me it would be fine to resume elmiron. He informed me any drug above a class C would be okay for pregnancy. I also did my own research online but I found a lot of anecdotal evidence and typical "don't take any chances" advice from mothers. Easy to pass judgment, harder to live life and work a full time job when you can't focus on anything but your bladder... As a person who believes more in science than hearsay, I decided to contact a teratogen information specialist for some true scientific information. I wanted to know the real deal. In case you did not know this, every state has one of these specialists you can consult for free advice on medications and supplements during pregnancy. Since I am from CA, I emailed [email protected]. (you can also call them toll free at 866-626-6847 or live chat online). Here is the teratogen specialist's comments on the risk level of taking elmiron while pregnant and breast feeding below:

    "Unpublished animal data does not find an increased risk for birth defects with Elmiron. Generally, this is not sufficient safety data for pregnancy because the human data is needed and Elmiron has not been studied for human pregnancy. However, what you read is correct about Elmiron having unique properties making it unlikely to pose a risk. Only about 6% of the medicine is thought to be absorbed into your blood system to be able to reach the pregnancy in the first place. Second, the molecule is large like low molecular weight heparins and therefore the small amount in the blood is unlikely to reach the pregnancy .

    There was a study in 1986 that also suggested there may not be placental transfer. “Abstract: “Eight women who were going to have an abortion between the 18th and 23 week of gestation for chromosomal abnormalities or haemoglobinopathies received intravenously 50 mg of pentosan polysulfate (PSP). Maternal results of haemostasis prior and after the injection of the drug were compared. Fetal coagulation parameters were tested on samples obtained by direct puncture of the umbilical cord under ultrasound guidance, 30 min after injection. Results were compared to those of normal fetuses at the same stage of gestation, obtained in the same conditions. In mothers' plasma, 30 min after injection, APTT was prolonged, factor Xa generation was markedly impaired, and factor V level was deeply decreased. By contrast, no modifications of these parameters were observed in fetal plasma, 30 min after the injection of PSP to their related mothers when compared to control fetuses. Thus the absence of biological modifications induced by PSP injection could demonstrate that this drug does not cross through the placenta.”

    While we would caution about a medicine with only reassuring animal data, Elmiron has properties related to low molecular weight heparin to provide additional reassurance.

    There is no lactation data for elmiron but the limited oral absorption and large size makes breastfeeding unlikely to pose a risk.

    I found this information really reassuring and helpful especially because this came from a very reliable source. Based on this info, I have decided to resume elmiron during my pregnancy. Although it will take time to build back up in my system, I have greater peace of mind overall now that I'm back on it. This is obviously a very personal decision to make for every woman but if any of you are suffering in pregnancy like I have been, this information is worth considering.

    For those who live outside of CA, you can visit the website https://www.mothertobaby.org to find your local teratology expert who can help answer any medication/pregnancy questions you have.

    Good luck to all of you pregnant women out there dealing with a double whammy- pregnancy and IC! Hugs!

  • #2
    Re: Good Teratology Info About Taking Elmiron While Pregnant

    Thank you for sharing your research. I also recommend that anyone who is pregnant discuss all medications with their physicians.

    Warm hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

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    • #3
      Re: Good Teratology Info About Taking Elmiron While Pregnant

      WOW!! Absolutely fabulous resource you've found and shared. Thank you very much. Did you happen to find our pregnancy resource center and the article we referenced as well?? I figure you must have since you referred to the grade "c" for elmiron. I will share this information!! Really well done!!!

      Jill
      Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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      Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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      • #4
        Re: Good Teratology Info About Taking Elmiron While Pregnant

        I conferred with my ob-gyn, Reproductive Endocrinologist, pelvic pain specialist, Lactation Consultant, and Dr. Hale's Infant Risk Center when deciding whether to continue Elmiron during my second pregnancy and during breastfeeding. They all agreed that they were comfortable with my taking Elmiron, so I continued Elmiron during the entire pregnancy and 3 years of breastfeeding. I did a lot of research on molecular properties and half-life of meds when deciding which meds to continue during pregnancy and breastfeeding.

        Dr. Thomas Hale is considered to be the authority on medication and breastmilk. This is his website, which also addresses medications and pregnancy:
        http://www.infantrisk.com/

        The Infant Risk Center has been very responsive to my requests for information, especially while I was breastfeeding.

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