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Does this mean it's not going to work for me?

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  • Does this mean it's not going to work for me?

    I have been doing twice weekly heprin, lidocaine and sodium bicarbonate instills for 4 weeks now. I don't think they are helping at all....and am not convinced that they aren't making it worse!! I want to give them a fair trial! Is is too soon to know? Or should I be feeling some change by now? If the heprin doesn't work should I even try to instill the elmiron?
    Current: -pelvic floor therapy, -weekly uracyst instills

  • #2
    Re: Does this mean it's not going to work for me?

    I've been doing them 3x/week since August and it took me a couple months to notice any difference. Have you talked to your uro about this? Maybe give them a call. I had an issue the first few weeks, and after talking to my uro they suggested switching catheters. I switched to spedi-caths and that helped a lot.
    ----------------------------------------------------
    My blog on IC, adoption, and academia: the garlic whisperer

    Diagnosed Jan 2013. Currently taking:

    200mg Elmiron morning and night
    25mg Elavil at night (no drowsiness or weight gain)
    culturelle in the morning
    SLIT drops for allergies (environmental) 3 drops/night under the tongue
    zyrtec 24 hour nightly (recommended by uro)
    Instillations 3x/week: Parson's Solution
    uribel and prelief as needed

    Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
    No longer need them, so I only take them during flares.

    Comment


    • #3
      Re: Does this mean it's not going to work for me?

      Unless you know they are making you worse, you might want to give it at least six to eight weeks.

      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.

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      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


      • #4
        Re: Does this mean it's not going to work for me?

        That is actually really good news to me that it took you so long also!! (That didn't sound very nice of my but I hope you know what I meant). Lol. Thanks for posting!! Really, that does a lot for my discouragement level. I was unable to do instillations at all until I started using lofric catheters. It was too painful and made me have constant burning and pee glass for days!!! The lofric a make it a piece of cake!! Haven't bothered my urethra at all!!! Amazing!!!! But my bladder is just taking hard to them. The first 2 weeks were great actually. But I think that it was just good timing. Because they aren't helping a lick yet. And actually I feel like my pain is worse the day after them. Not to bad while holding them, but as soon as I pee, it is fire burning pain for the next whole day!! My uro seemed to think that and the end of the 3 week set I would notice some kind of change. But I did cry to the nurse that I didn't think it was helping and she said sometimes it takes some people a lot longer!! She thought by the end of 12 weeks I should have a pretty accurate idea of how they were working or not. So I don't know. Thank you again for replying!!
        Current: -pelvic floor therapy, -weekly uracyst instills

        Comment


        • #5
          Re: Does this mean it's not going to work for me?

          LOL...I completely understand what you mean!! It helps with the stress to know that it can take longer. That's great about the caths too! I still get a little burning with the spedi caths, but not like before. I just try to relax.

          One thing I do with the instills is go lay down for a bit after doing it. I do mine in the evening instead of the morning. About an hour before bed. I relax when I sleep and that helps me the next day.
          ----------------------------------------------------
          My blog on IC, adoption, and academia: the garlic whisperer

          Diagnosed Jan 2013. Currently taking:

          200mg Elmiron morning and night
          25mg Elavil at night (no drowsiness or weight gain)
          culturelle in the morning
          SLIT drops for allergies (environmental) 3 drops/night under the tongue
          zyrtec 24 hour nightly (recommended by uro)
          Instillations 3x/week: Parson's Solution
          uribel and prelief as needed

          Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
          No longer need them, so I only take them during flares.

          Comment

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