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***HELP*** What are your daily medications and supplements? Include All Details

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  • ***HELP*** What are your daily medications and supplements? Include All Details

    Hi ICFamily,

    I would love an updated list of medications and supplements that is currently working (or not working but trying) for you? Let's share current insider secrets!

    Here is my current list:

    Myrbetriq *50mg/daily
    Gabapentin *100mg/3x day
    Medical Marijuana *Vape before bed, High THC plus CBD, Indica Strain
    Prilosec *as needed if on hand

    Previously Tried:

    Elmiron
    Myrbetriq *25mg.
    Topomax
    Tramadol
    Mobic
    Flexeril
    Xanax



    Is it working for me? Some days. Interested in what supplements are working for everyone? Who uses bladder builder and bladder rest? Who uses CBD? Who is still on traditional medicine?

    I need better pain management for flare days. Currently don't have anything stronger for those days. And sex days....And bad eating days....

    Let's get a large response going so we can all look at the same thread for current medication best practices for pain management!!

    Hope you are staying safe and sane <3
    JillElise

    Diagnosed with IC July 2008

    Current Meds:
    Elavil
    Ditropan
    Flexeril
    Xanax

    Can't take:
    Elmiron

  • #2
    I am on multiple medications for other problems, but my IC is primarily controlled by diet and drinking enough water. I do take Bladder Rest as needed, Prelief if away from home. I also have a morphine pain pump, which is for nerve damage from cancer surgery and Norco for the same reason --- but I strongly feel those are also controlling any bladder discomfort.

    Thank you for sharing.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      ICNDonna Awesome detail Donna. Thanks so much for sharing! I know some of us wish diet wasn't so important but you are a great example as to why it is!


      ***me typing while I'm eating "Welch's Fruit Snacks" knowing it will bother my bladder 🤦
      JillElise

      Diagnosed with IC July 2008

      Current Meds:
      Elavil
      Ditropan
      Flexeril
      Xanax

      Can't take:
      Elmiron

      Comment


      • #4
        You might be able to tolerate a little bit of the fruit snacks --- I can have a little --- but I encourage you to limit how much.


        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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]

        Anyone who says something is foolproof hasn't met a determined fool

        Comment


        • #5
          Going to Gym is my routine. It's not a day when I don't go to the gym. I always push myself to the limits and I use supplements that consist of 100% natural formula like GenF20 Plus, that had a lot of benefits and I'm sure it's natural, because I haven't had any side effects since I'm using it and it's not and you don't have to go to the gym if you want to use this supplement.

          Comment


          • #6
            I was diagnosed in 2013. I did not keep track very well of all medications I tried and bladder instillations I had but it triggered pelvic floor dysfunction and pudendal neuropathy. After going to PT for the pelvic floor, everything started getting better. The frequency got less and pain relieved. I only had discomfort just shortly before needing to go to the bathroom. I was on no medications. I would only drink a cup of water with 1/4 teaspoon of baking soda a half hour after eating. (The baking soda is also good for bringing up your Ph level in your blood.) I also continued the exercises I was taught in PT and continued on an IC conscious diet. I love chocolate and ice tea which I had to give up.

            In early 2020, I felt completely back to normal. I did not have to get up at night and only used the bathroom 3 to 4 times a day. I had no discomfort or pain. I had started taking turmeric one week before which I have no idea if that had any effect, but to this day I have continued it, Then, on September 2nd of this year, I had my first flair. I do have to admit that during my remission I ate everything and stopped my exercises and only drank the baking soda water periodically. I now know that I will continue all of these should I hopefully go in remission again. In the meantime, I have continued the baking soda. The first month I also drank marshmallow root tea that seemed to calm the bladder and is supposed to help heal the bladder. I have continued the exercises and watched my diet, . The pudendal neuropathy was worse than when I had it before. My internist prescribed 300 mg of Gabapentin 3 times a day and that completely took care of the problem. So at this point, I feel like I am on the path of hopefully remission again.

            Comment


            • #7
              I agree with you that it can be important to keep track of medications we have tried --- it's too easy to forget and we can end up repeating meds we've already tried. I'm glad you're feeling better.

              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

              Patient Help: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              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]

              Anyone who says something is foolproof hasn't met a determined fool

              Comment

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