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IC Medications & Their Use During Pregnancy

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  • #31
    Re: IC Medications & Their Use During Pregnancy

    Hi Katierose,

    I guess if you are wanting to become pregnant, I would definitely consult with your OBGYN and talk to her about what meds you have to be off of and such. They will be able to tell you what is safe to take and what is not. I also love uribel. it really helps me, but I get side effects from it. Also the longer I take it the worse the side effects. It can very hard on the digestive tract if taken for long periods of time from what I found out.

    Some women actually have felt better bladder wise during the pregnancy. I guess due to the whole hormonal shift.

    I don't think IC makes a person have high risk pregnancy. The only downside is that there are some who get worse bladder issues when pregnant and that can cause a lot of stress. Stress is bad for any pregnancy. I think that is about the most dangerous thing that could happen. I would hook up with a urogyne or a specialist that will work with your OBGYN to help see you through the pregnancy and be able to help treat your IC if it should act up. I mean cover all your bases before you even start trying to get pregnant so you are on top of things. It is better to be prepared than not have anyone who can help you when and if the time comes.

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    • #32
      Re: vitamins

      Originally posted by katierose View Post
      I have been feeling great for a few months taking Uribel twice a day, drinking lots of water and rooibos tea, yoga/stretching, and watching my diet.
      I FINALLY convinced my husband that it was a good time to start trying to get pregnant so I started taking some chewable vitamins and began trying to slowly take myself off the Uribel since it's a class D drug and not safe for pregnancy.
      About 24 hours without Uribel and I backslid into a full out flare that I've been struggling to get it under control. I think since I had been feeling so well I got a little cocky and wasn't working out a fair bit and eating a lot of risky food. I should have known better. I started taking the uribel again and am seeing some improvement.
      I have an appointment with a new urogynocolgist to talk about my options, but I was wondering if any of you have any tips or advice for stopping your meds? Did you quit cold turkey or slowly stop?
      Or if there are any questions you wish you'd asked your doctor or things you wish you'd done for your health before you got pregnant?
      Are you considered a high risk pregnancy when you have IC?
      And, at what point do you guys go to the doctor when you have a flare to check and see if it's actually a UTI? I hate going to the doctor every time I feel a flare coming on but I'd also really hate to have an untreated UTI.

      Thanks guys!!
      One thing you might do is using the home test kits for UTI --- they aren't 100%, but can give you a better idea of whether you have an infection.

      Donna
      Stay safe


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      • #33
        Re: vitamins

        Donna- The at home UTI test strips are a great idea!
        Jen- I also get weird side effects from the uribel, but mostly it makes me tired and a little nauseated. And I'm not going to lie... I'm a little tired of having blue pee all the time

        I had an appointment yesterday with a new urogyn.
        I felt like my urologist wasn't taking a very proactive approach. She technically never even diagnosed me with IC, she says it's recurrent UTI even though I haven't had a positive culture in 2 years. So all she does is tell me to come back in a year if my symptoms get worse... I found almost everything I know about IC through this website and doing my own research...
        So the new doctor says that he is about 50/50 on whether I have IC or not. I don't have ALL the traditional symptoms but I definitely have a few. I don't have frequency/urgency unless I'm in a "Flare", I don't have any reaction to pressure points in exam. I don't have ulcers in my bladder, but I do have inflammation. he thinks it could be an injury to the bladder that still needs more time to heal.
        His new treatment plan for me is specific for trying to get pregnant. For now he is going to write me a standing prescription for preventative macrobid to take after intercourse to see if I could really just be getting little mini infections. While I take that i will stick to the IC diet just in case and slowly take myself off Uribel. He said it's not the worst thing in the world to take while pregnant but that we should avoid it if we can. So I'm down to one pill in the morning.
        Then I have a follow up in four weeks. If my symptoms are improved we will keep going with the same treatment, but if there is still pain we will try bladder installations.
        He said those are safe during pregnancy so I would at least be able to have some relief if pregnancy was difficult.
        If THAT doesn't work they would try elmiron, but he thinks that should be a last resort since it's so expensive and not always completely helpful.
        I've been seeing some really great results with stretching and kegels over the last 2 weeks. A lot of the tightness I feel in my pelvis is releasing. So now I'm wondering if it's muscle related/PFD at least partially.
        Overall I feel really good about having a doctor with a plan. And I'm so grateful to have an improvement in my pain. I will admit that I'm a little scared and worried about stopping Uribel. I think I might be emotionally attached to it because I remember what it was like before. I think having the macrobid will be a good piece of mind. I've made a lot of progress and I don't want to backslide.
        And, of course, I'm so grateful to have a group of people to share with and get feedback from! Thank you guys!

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        • #34
          Re: IC Medications & Their Use During Pregnancy

          I'm a labor and delivery nurse and also an IC sufferer. Narcotics are sometimes prescribed during pregnancy in special situations. Those situations usually involve 1. the patient being in severe pain, 2. The doctor acknowledging or believing the patient is in said pain and 3. The doctor trusting the patient enough to take the Med only when absolutely needed. They might even doll out a script a few doses at a time.
          We sometimes give narcotics to pregnant women with kidney stones for example. That would usually be only while she was inpatient bc that is usually a one and done complication. Once the stone passes the pain is gone.
          Most narcotic studies have been done on addicted patients who overuse to the extreme. The problem with not controlling a pain/inflammation flare of IC during pregnancy is that it could send a mom into premature labor. The absolutely no narcotics during pregnancy rule is not always the best policy. If you are needing a few doses of narcotics on a daily basis to control flares this could be a concern for fetal development. If you only need them a few times a week this would greatly lessen the concern in my nursing opinion. But you really would need an Obgyn who is familiar with IC bc most Obgyns that I know wouldn't give ongoing scripts for narcotics. Of course most of them know little to nothing about IC too :/.
          The greatest time of concern for any Med is the first trimester. If you can get through that with as few flares as possible the risk decreases some.
          Hope this info is helpful. I'm newly diagnosed and still learning myself. I'm about to have this conversation (pain meds during pregnancy) with my Obgyn and see what he says. I just moved back to La so he is my new doc and we really haven't established a rapport yet. I hope he is familiar with IC and how to handle it during pregnancy and I hope he doesn't think I'm a drug seeker or I'll be shopping for a new doc 😜

          Originally posted by Iris5 View Post
          My post was not meant to scare anyone or insult them. The purpose of my post was merely to share my successful experience and to show alternative methods that I used because I really did not want to take meds during my pregnancy. As I stated, I worked really hard for 2 years trying to get my body in shape for this pregnancy. I was lucky that my hard work paid off - the pregnancy did not have any long-lasting effects on my IC and my body quickly bounced back into remission within a few months. I hope these ideas would work for others as well. If you choose to use narcotics during your pregnancy, that is your choice and you don't have to justify it to anyone here on this site. I really don't know the consequences of taking these drugs, and frankly no one does because it is considered unethical to test these drugs on a pregnant woman.

          A good place to start your research would probably be perinatology.com. That is where I checked all of my meds during pregnancy, and it helped make my decision.

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          • #35
            Re: IC Medications & Their Use During Pregnancy

            Hi msveritas2000 - Thank you for your post. I have had 2 successful pregnancies on a cocktail of meds and I did my best to limit what I took and didn't take certain meds with known data in any trimester. I called UC San Diego and talked to their database of adverse reactions in pregnancy with meds and it was helpful. They went over everything I was on with me. MY Uro was like "see you later" and so after my OB, who I had met with numerous times said she would take me on- was horrific to me when I got a UTI in my 1st trimester. I was lucky then to move to a great OB who would only see patients if pregnant. I was in San Francisco. It was crazy walking into a pharmacy to get my meds pregnant. The second time my pain med was really hard to find and it was the worst time to make a dose change/med change so I had it compounded locally for hundreds of dollars and then I had to see this small Asian pharmacist who did the compounding and I KNOW he thought I was workers. I had 2 c sections b/c no one cold tell me if I would get better or worse wth with delivery (and no my symptoms did not improve at all during pregnancy)--by baby 2 I had a pain MD do all my prescribing and he even came to a Womans hospital to set me up (prolonged epidural for 48 hours, child size catheter, valium)----and I never breast fed either child b/c they had my liver when I was pregnant, once out I didnt' want to expose them. I never got a period back after baby #1, so used some fertility drugs and got preggers with #2. She spent 9 days in NICU, most likely smaller for gestational age (I knew the date was off as I KNEW when I conceived b/c sex was and is still hard to have.

            With that said.....get all your documentation, and meet with multiple OB's to see who will and won't take you and be honest and blunt b/c thee is no way you should suffer to extremes to have a family when like you said, literature is done on addicted moms. PM me any time. MY kids are 5/8- I had my bladder out, still have PFD and right now a cranky pouch. Hmmm. Good Luck

            Melanie
            I am blessed to have an Indiana Pouch now
            IC since childhood, finally diagnosed at 31 yo
            PFD/Pelvic Pain,SI joint and LBP
            Low Back Pain s/p spinal fusion at 19 with more nastiness in back
            Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
            Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
            Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
            Hysterectomy 2/3/12 w one ovary removed
            Dry Eyes
            L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
            Still have issues, still take meds.

            I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
            Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:

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