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  • Instills: Types & Availability Questions

    Hi everyone! I have been considering instills as part of my treatment plan. From my research this is what I'm finding are some of the main "ingredients" available in the US for use (and be made into a number of installation cocktails)

    Heparin
    Marcaine
    Lidocaine
    Sodium bicarbonate
    Elmiron
    Solu-Cortef

    Not Available in the US

    Ialuril (Australia)
    Uracyst (Canada)
    Gepan (Germany)
    Cystistat (Canada)

    What combination is best for good results long term? I am reading a lot of good stuff about Cystistat but if I am understanding correctly, this is only available in Canada is there any way to have a Urologist order it from Canada and have it shipped in to a US pharmacy if they see it appropriate?
    Diagnosed via cysto/hydro 2/6/2015
    Symptoms: frequency, urgency. uretha discomfort, mild bladder pain (a raw sore type feeling.)
    CURRENT TREATMENTS:
    IC Diet (2/15) , Elmiron 100-300mg (3/15-5/16) insurance issues switched to PPS-DR (5/16-present) 2 150mg capsules daily (pentosan polysulfate sodium same formulation in Elmiron) DH Aloe 3-6 capsules daily (3/15), Schiff Digestive Advantage probiotics 1 pill daily (3/15), Amitriptyline 25mg- (5/15-8/16)attempting to wean down due to suspected weight gain side effect. Hydroxydine 25-50mg as needed at bedtime (5/15) Quercetin 2 pills daily to help immune system and body inflammation. Cystoprotek 4 capsules daily (8/15). Prelief as needed.
    USE DURING FLARES: Heating pad, ice packs for PFD, Vaginal Valium 10-20mg, Uribel, Pelvic floor stretches.
    PAST TREATMENTS: PFD physical therapy (6/15-10/15) & Counseling for stress mgt (9/15-12/15) both very helpful. GNC brand progesterone cream (not sure if this made a difference). Too many different diets and herbs to list.
    TRIGGERS: STRESS STRESS STRESS. BCP. Hormonal fluctuance (ovulation/period). Coffee, artificial preservatives and dyes.

  • #2
    Re: Instills: Types & Availability Questions

    Sodium bicarbonate is frequently used to dilute the solution. Marcaine and lidocaine are both analgesics and help ease the pain. Solu-cortef (and sometimes other steroids) can help with healing, and heparin also can help with the healing process. Elmiron hasn't been approved by the FDA as an instillation, but some doctors are using it by opening the capsule and pouring it into the solution. There's also DMSO, which isn't used as much any more and I have read that it should not be more than 25% of the solution when instilled.

    I have self instilled sodium bicarbonate with heparin and it helped for quite a while. I also had DMSO instillations for several years before it stopped helping. When I had DMSO, they instilled lidocaine first, then waited a few minutes before instilling the DMSO solution.

    There's a link to the AUA Guidelines in my signature below, which can be helpful in making decisions about treatments --- and some ideas to discuss with your doctors.

    Good luck!
    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
      Re: Instills: Types & Availability Questions

      Thanks for your response Donna. Hope you and your family had a Merry Christmas
      Diagnosed via cysto/hydro 2/6/2015
      Symptoms: frequency, urgency. uretha discomfort, mild bladder pain (a raw sore type feeling.)
      CURRENT TREATMENTS:
      IC Diet (2/15) , Elmiron 100-300mg (3/15-5/16) insurance issues switched to PPS-DR (5/16-present) 2 150mg capsules daily (pentosan polysulfate sodium same formulation in Elmiron) DH Aloe 3-6 capsules daily (3/15), Schiff Digestive Advantage probiotics 1 pill daily (3/15), Amitriptyline 25mg- (5/15-8/16)attempting to wean down due to suspected weight gain side effect. Hydroxydine 25-50mg as needed at bedtime (5/15) Quercetin 2 pills daily to help immune system and body inflammation. Cystoprotek 4 capsules daily (8/15). Prelief as needed.
      USE DURING FLARES: Heating pad, ice packs for PFD, Vaginal Valium 10-20mg, Uribel, Pelvic floor stretches.
      PAST TREATMENTS: PFD physical therapy (6/15-10/15) & Counseling for stress mgt (9/15-12/15) both very helpful. GNC brand progesterone cream (not sure if this made a difference). Too many different diets and herbs to list.
      TRIGGERS: STRESS STRESS STRESS. BCP. Hormonal fluctuance (ovulation/period). Coffee, artificial preservatives and dyes.

      Comment


      • #4
        Re: Instills: Types & Availability Questions

        Hi rshell84,
        I'm set to begin a series of instills myself in Canada - when discussing different treatment options, my uro actually indicated that there isn't enough evidence to suggest Cystistat is any better than an instill with Hep/Lido/Sodium Bicarb, so we're proceeding with that (Heparin etc.)
        Not to say others haven't benefited greatly from it, just from her experience and studies researched, Cystistat wasn't overly intriguing as an option for results (in her opinion only).
        The Heparin mixture is supposed to be very soothing, and are highly recommended by the uros here, and my own family doctor, so I'm looking forward to trying them. But again, this is my medical team's opinions - your docs may have other ideas

        Comment


        • #5
          Re: Instills: Types & Availability Questions

          Cystistat (Gepan my case) should build up broken bladder lining. Not sure other instills have same effect?.. Soothing effect anyway, but I believe that can be the main difference. Somebody more knowledgeable can hopefully give more exact answer.

          Comment


          • #6
            Re: Instills: Types & Availability Questions

            Originally posted by Braedley View Post
            Hi rshell84,
            I'm set to begin a series of instills myself in Canada - when discussing different treatment options, my uro actually indicated that there isn't enough evidence to suggest Cystistat is any better than an instill with Hep/Lido/Sodium Bicarb, so we're proceeding with that (Heparin etc.)
            Not to say others haven't benefited greatly from it, just from her experience and studies researched, Cystistat wasn't overly intriguing as an option for results (in her opinion only).
            The Heparin mixture is supposed to be very soothing, and are highly recommended by the uros here, and my own family doctor, so I'm looking forward to trying them. But again, this is my medical team's opinions - your docs may have other ideas
            Thank you Braedly. Hope the instills work well for you. I still haven't tried them yet but am considering them possibly in the future. Keep us posted on how it goes for you.
            Diagnosed via cysto/hydro 2/6/2015
            Symptoms: frequency, urgency. uretha discomfort, mild bladder pain (a raw sore type feeling.)
            CURRENT TREATMENTS:
            IC Diet (2/15) , Elmiron 100-300mg (3/15-5/16) insurance issues switched to PPS-DR (5/16-present) 2 150mg capsules daily (pentosan polysulfate sodium same formulation in Elmiron) DH Aloe 3-6 capsules daily (3/15), Schiff Digestive Advantage probiotics 1 pill daily (3/15), Amitriptyline 25mg- (5/15-8/16)attempting to wean down due to suspected weight gain side effect. Hydroxydine 25-50mg as needed at bedtime (5/15) Quercetin 2 pills daily to help immune system and body inflammation. Cystoprotek 4 capsules daily (8/15). Prelief as needed.
            USE DURING FLARES: Heating pad, ice packs for PFD, Vaginal Valium 10-20mg, Uribel, Pelvic floor stretches.
            PAST TREATMENTS: PFD physical therapy (6/15-10/15) & Counseling for stress mgt (9/15-12/15) both very helpful. GNC brand progesterone cream (not sure if this made a difference). Too many different diets and herbs to list.
            TRIGGERS: STRESS STRESS STRESS. BCP. Hormonal fluctuance (ovulation/period). Coffee, artificial preservatives and dyes.

            Comment


            • #7
              Re: Instills: Types & Availability Questions

              Hi rshell84, my first one was yesterday, and I had been flaring up for about 24 hrs prior to the treatment. It helped to calm it down a bit for me, nothing drastic, but allowed me to have less frequent trips to the bathroom for a bit. They only put 50ml in and ask that you hold it for at least 20 min. The whole appt was about 15 min start to finish. I had minor discomfort last night (which is likely the flare I was having continuing on) and no major complaints, just a tiny bit irritated where the cath was, but it went away quickly.
              Looking forward to trying the remaining 5 in this series and seeing if it helps a bit. Pelvic floor therapy has also been suggested, but I'm nervous about that...

              Comment


              • #8
                Re: Instills: Types & Availability Questions

                Originally posted by Braedley View Post
                Hi rshell84, my first one was yesterday, and I had been flaring up for about 24 hrs prior to the treatment. It helped to calm it down a bit for me, nothing drastic, but allowed me to have less frequent trips to the bathroom for a bit. They only put 50ml in and ask that you hold it for at least 20 min. The whole appt was about 15 min start to finish. I had minor discomfort last night (which is likely the flare I was having continuing on) and no major complaints, just a tiny bit irritated where the cath was, but it went away quickly.
                Looking forward to trying the remaining 5 in this series and seeing if it helps a bit. Pelvic floor therapy has also been suggested, but I'm nervous about that...
                That's great! Very encouraging and happy to hear this for you. I hope they keep helping you feel better and better.
                Diagnosed via cysto/hydro 2/6/2015
                Symptoms: frequency, urgency. uretha discomfort, mild bladder pain (a raw sore type feeling.)
                CURRENT TREATMENTS:
                IC Diet (2/15) , Elmiron 100-300mg (3/15-5/16) insurance issues switched to PPS-DR (5/16-present) 2 150mg capsules daily (pentosan polysulfate sodium same formulation in Elmiron) DH Aloe 3-6 capsules daily (3/15), Schiff Digestive Advantage probiotics 1 pill daily (3/15), Amitriptyline 25mg- (5/15-8/16)attempting to wean down due to suspected weight gain side effect. Hydroxydine 25-50mg as needed at bedtime (5/15) Quercetin 2 pills daily to help immune system and body inflammation. Cystoprotek 4 capsules daily (8/15). Prelief as needed.
                USE DURING FLARES: Heating pad, ice packs for PFD, Vaginal Valium 10-20mg, Uribel, Pelvic floor stretches.
                PAST TREATMENTS: PFD physical therapy (6/15-10/15) & Counseling for stress mgt (9/15-12/15) both very helpful. GNC brand progesterone cream (not sure if this made a difference). Too many different diets and herbs to list.
                TRIGGERS: STRESS STRESS STRESS. BCP. Hormonal fluctuance (ovulation/period). Coffee, artificial preservatives and dyes.

                Comment

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