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How long should I give heparin instillations to work?

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  • How long should I give heparin instillations to work?

    I have had four heparin instillations so far and haven't seen relief. For the first hour after the instillation, I don't feel like I have the urgency; however, as soon as I do go to the bathroom the urgency and pain returns immediately. It almost feels as though my symptoms get worse after the instillation.

    Does anyone else have this issue?

    How long should I give the instillations before giving up or asking my doctor if there is a different "cocktail" that may work for me?

    I would appreciate any and all advice at this point.

    Thanks,

  • #2
    I had an installation (cocktail of Heparin, Lidocaine and Sodium Bicarbonate) a few days ago. I got immediate relief, but as soon as I voided two hours later, the symptoms returned. I had three installations several months ago and I did not have an immediate return of symptoms upon voiding. I have an apt. with my doctor to hopefully find out a possible cause and remedy. I will post any helpful information I get.

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    • #3
      My dr. told me it takes weeks for the bladder to begin to heal and to expect any real lasting relief from the instills. (while also working on the IC diet) He starts his patients with severe symptoms out on 6 weeks of 2 x weekly instills. It took about that long for me. Until then I only had relief while the medication was in my bladder. I have seen other people on here say that the instill made their symptoms worse so that is a possibility. For me, it was worse at first until we found the right catheter. My Dr added kenelog when the heparin, sodium bicarb, elmiron, Marcaine and lidocaine didn't give as long lasting relief as I wanted.
      Diagnosed with IC 2008 via in office cystoscopy and symptoms

      Current treatments:
      -At home rescue instillations as needed
      - IC diet
      - Meds for IC: Vistaril (I have tried a TON but discontinued all but the Vistaril)

      Other diagnosis - Urethral Syndrome, Vulvodynia, PFD, Pelvic Congestion Syndrome, Pudendal Neuralgia (Clitoral Branch)

      Boston Scientific Spinal Cord Stimulator Implanted July 31, 2013

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      • #4
        Thank you Mary; I guess I will keep trying the instillations for a while.

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        • #5
          Thank you for your helpful comments, Mary. My doctor presented the rescue instills as a way to alleviate symptoms, not a treatment that would help heal the bladder over time. I have been getting them when the pain gets so severe I can't stand it anymore. She prescribed Elmiron, which I took for about six months, but had to stop because it was upsetting my stomach so much.

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          • #6
            My doctor wants me to discontinue the installations and start taking Elabil; this is in addition to Eirin, Atarax and Vesicare which I am currently taking. Since nothing has relieved my symptoms for the past few months I am really hoping the Elavil makes a difference; even a minor difference would be appreciated at this rate.

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            • #7
              I've had instills for about a month now, 3x/week. I am now starting to notice a difference. I have eaten things that I know would have bothered me before, and they haven't. And, when I was in a flare, the instill gave me immediate cooling relief along with the uribel. Now that I've been doing them for a month, they are going to teach me how to do them myself at home next week. I'm pretty excited. They said that I can do up to 2 a day, as needed, but want me to continue with the 3x/week when I'm not in a flare.
              ----------------------------------------------------
              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.

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              • #8
                That is wonderful! I am very happy for you that you will now be able to take control of the instills. AND, that they are working so well for you.

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