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IC returns with pregnancy after 4 year remission

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  • Kyeventer7
    replied
    Originally posted by Jinny Jean View Post
    Hey guys, I have a question. I am not pregnant, but in the future plan on having kids. I am on Elmiron currently and have been for a few years normally with no symptoms. It scares me that I will have my symptoms worsen when I do decide to have kids if I go off of Elmiron Is it possiblt to stay on Elmiron and have more managable symptoms? Has anyone had luck with this or is is mandatory to go off of it when pregnant? I have often thought about staying on it..

    Jenn
    I wish I could give you a contest answer. As someone else said, its possible you may not have any problems at all. I was in remission for 5 years or more and during that time had my first child, no IC problems during that pregnancy. Except for the 3rd trimester, had issues peeing all the time and sometimes couldn't pee but I honestly think that was more the baby lying on my bladder than the IC. Now here I am though pregnant with my second child and my symptoms came back for a few weeks worse than I ever had before. Every pregnancy is different!! My doctor put me back on emilron and amitripyline and is allowing me to take it during my whole pregnancy. I do plan to try to get off the amitripyline but will stay on the emilron. Elmiron is a category B so it is safe for pregnancy.

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  • snslife
    replied
    I think it depends on your doctor. Mine won't let me take it but I know others who have. From my research it's a class B so it has the same risks as Tylenol. You might be lucky and have no symptoms at all!
    I changed to high risk Obgyn Who is also a urologist and did my first bladder instill on Thursday. I will be getting then every week from now on. I'd much rather take the medications I took in the past but they won't allow any if it.
    But in the end it will be all worth it. Good Luck. 😊

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  • Jinny Jean
    replied
    Hey guys, I have a question. I am not pregnant, but in the future plan on having kids. I am on Elmiron currently and have been for a few years normally with no symptoms. It scares me that I will have my symptoms worsen when I do decide to have kids if I go off of Elmiron Is it possiblt to stay on Elmiron and have more managable symptoms? Has anyone had luck with this or is is mandatory to go off of it when pregnant? I have often thought about staying on it..

    Jenn

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  • Kyeventer7
    replied
    Sorry posted too soon!

    Meant to say let me know how you are doing! I'll be praying for you to get some relief! And do the ic diet!

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  • Kyeventer7
    replied
    Oh you poor thing! I'm so sorry you are going thru this! I completely understand how you feel. Yes I have had several bladder instillations. They helped me temporarily but don't feel they helped much. But it's different for everyone. Basically the bladder instill will numb your bladder and hopefully give you some relief. The problem I have with them or any time I have any kind of anesthesia is I have a hard time emptying my bladder the first pee afterwards because of the numbness. I had always had to self cath for the first pee but had no trouble going after that. Just to ease your mind you might want to learn to self cath just in case but hopefully that won't be a problem for you. I hear that's normal for some people. For example, when I had my daughter I had a spinal block (numbness from the waist down) and had a catheter. When they took the catheter out I couldn't pee on my own and the nurse had to cath me but after that I was fine. I've heard other people say the same thing happened to them so I didn't feel so bad.

    Another thing to think about, elavil is a category C drug for pregnancy meaning its risky. Again don't wanna scare you because I heard other people talk on these boards and said they took it during their pregnancies and their babies were fine. But it's something in the back of my mind. That being said an OB that specializes in IC prescribed it to me when I was out of town visiting a friend and at my wits end with the horrors urgency! My OB doesn't particularly want me on it but said if I need it she will allow it. I honestly don't think my OB knows jack about IC. That is why I'm seeing a uro who is working with my OB for my treatment.

    That's great you're getting to see a uro sooner and hopefully the instill will help you. Talk to him about getting on elavil or at least talkin to your OB to let you start it.

    Another thing to try is acupuncture. I've had 3 sessions so far and I believe it's helping. The acupuncturist has treated people with IC and urinary problems and specifically targets pressure points for bladder issues.

    Let me know how things go for y

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  • snslife
    replied
    Sorry all the grammar errors stupid autocorrect! Lol

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  • snslife
    replied
    I am so sorry to hear that 😔 but I believe it makes you more grateful of the beautiful babies you do have.
    I was taking 25 mg of elavil a night. I remember the first two weeks I felt so out of it because I think it was to high. I can't imagine having to self cath! Having the doctor do it sends me into a fit of anxiety. How far along were you when you had to do that?
    Have you had a bladder instill? I actually just got back from the ER after the night I had I was desperate I knew they probably went gonna do anything burnout was worth a shot. They were able to get me in tomorrow with the head urogynecolgist if the hospital. They said he could do an instill. I'm a little nervous as to what this is but ill try anything at this point. Maybe he could put me back on the meds. So frustrating!

    I am glad the elavil seems to be improving your symptoms. I have a good feeling your symptoms will be gone in 2nd trimester!

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  • Kyeventer7
    replied
    Hey there again! I'm due on July 24, so I'm only about a week and half ahead of you. My daughter is 2 1/2 and she is my little mini me . So, maybe we'll get a boy this time, but either way we are happy! This is actually my 3rd pregnancy, we unfortunately miscarried last summer early in the first trimester. And as I said, no IC symptoms with either pregnancy so it is really true that every pregnancy is different! This will surely be my last child, boy or girl. I will most likely get a C section again so I plan to get my tubes tied.

    So, I'm glad to hear you are getting to see your uro sooner rather than later but in the meantime how are you coping? I know when my symptoms first came on almost a month ago I was absolutely miserable! This constant horrid feeling of needing to go was 24/7 and I was in tears everyday! It started out me thinking that I couldn't empty my bladder all the way and when i went into to see my uro they showed me how to self catheterize myself which I couldn't believe I was having to do. Then they finally realized that it was mostly my IC acting up and giving me that feeling that I wasn't emptying it all the way. I don't ever remember having the urge to go as bad as it has been in the past few weeks. I couldn't get relief even when I could go! I started to finally feel better after about 2 weeks on the elavil. Mainly, I still feel a little uncomfortable urge to go about every 45 min to an hour, but I make myself wait at least a couple of hours between voiding or until its unbearable to hold it anymore. I just don't want that uncomfortable feeling at all! I'm hoping after several more weeks on the elavil that I will feel more and more normal again. I'm only taking 10mg so I'm not sure if I increased the dosage if that would make anymore of a difference. How much were you taking once you started to feel like you were in remission?

    I'm pretty sure Elmiron put me into remission before. It seems like my symptoms just slowly went away until I felt completely normal. However, like I said the urgency I've been having I don't think has ever been this bad!

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  • snslife
    replied
    It does make me feel much better to know I'm not the only one. Makes me feel less crazy! I called uro again and got in feb 6 so can't wait. Hopefully ill get put back on elmiron and elavil because it seemed to be what put me into remission for so long. I'm due August 4. I can't wait! I want to know if its a boy or girl! When are you due? How old is your first?

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  • Kyeventer7
    replied
    Wow we have the exact same symptoms! I too have days where I sometime have a hard time peeing plus the urgency and frequency!

    Well it's nice to know someone who knows exactly what you're going through. So as you said, I'm praying we will go back to normal after our babies are here or at least it'll get easier once we are well into 2nd trimester. Ask your doc about maybe getting back on the elavil!

    So when is your baby due? Congrats by the way! I was able to enjoy my first pregnancy and I hope you can do the same. Please stay in touch! I think we can add each other on here as friends.

    Leave a comment:


  • snslife
    replied
    It was about a month. I would have days I felt better then days I felt worse. But in like 4 weeks I would have like 5 days of feeling good and one bad day till eventually I didn't have any at all. I think it is probably already starting to work if you had a day or two symptom free. 😊

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  • snslife
    replied
    Hopefully the meds are starting to work. I remember when I was first diagnosed on 2007 it took a good month for the meds to kick in. I'd start feeling a little better then I'd have a few bad days. So hopefully there's light at the end of the tunnel!
    My symptoms are constant urgency and frequency. I also have trouble getting the stream started. Ill get a few drops out and couple minutes later ill push out a lot more and it's painful. Maybe we will both improve in our second trimester. Like nausea or being tired, maybe this can be a first trimester symptom for us ICers. We can hope!

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  • Kyeventer7
    replied
    Shannon quick question too while I'm thinking about it. The only med I was in before was elmiron. My symptoms were never bad enough to need anything else, which kinda scares me now since they are worse. Anyway how long were you on the elavil before you feel like things were under control? I've been on it for 20 days I think and I still have bad days like I don't feel normal again. So I'm wondering if the med has yet to take full effect still?

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  • Kyeventer7
    replied
    Oh no that's horrible that your uro can't see you right away! Did you tell them you're in pain and need some relief ASAP? What are your main symptoms? Mine are urgency and frequency and sometimes have trouble peeing. It's a nightmare! I've never really had any pain.

    My OB has ok'd me to take emilron again, hoping I will get some relief from that in a few months. I'm also on amitripyline, and uribel. These meds are supposed to help with the urgency and frequency symptoms. My OB said she would rather I not take the amitripyline but she said if I really need it then she will allow it. I'm also following the diet religiously and take prelief which I heard it safe for pregnancy also. Although like you, prelief had never really seemed to help but maybe it takes acid out of food that could make me flare worse. I'm also trying acupuncture and think it may be helping too.

    Yes I know how miserable you are but at least if it is pregnancy related then there is some light at the end of the tunnel. Try to relax, I know that's easier said than done because man do I know how hard that is. Hopefully you'll get some relief here soon. I finally did get some relief this past week then I started feeling bad again today. I'm just hoping I go back to feeling good again tomorrow.

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  • snslife
    replied
    I'm so sorry you're going through this too! Although its nice to know I'm not alone! I actually made an appointment today for a new uro that I found on this website but of course it's like a month wait. Sigh... What meds are you taking now? I've been taking prelief but I'm scared its bad for the baby. Same goes with azo. I don't feel it helps anyway. I haven't been able to take prenatal either but Obgyn says its ok. Every medicine I used to take the Obgyn says I can't take it.
    I really do think its hormones. I have been googling everything these last couple weeks trying to find some sort of answer or connection. I want to enjoy this time in my life but instead I am miserable!!!!!
    Hope things get better for you! You are not alone!

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