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DMSO or rescue instill? Which to choose....

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  • DMSO or rescue instill? Which to choose....

    Well, I talked to my uro today and I think that I may give in and do instillations. He does DMSO, but he said he's willing to do a rescue instillation with the heparin, sodium bicarb, etc. However, I would be his first rescue instill patient. Honestly, I'm getting ready to call him back and say 'let's do it' simply because I'm so frustrated with this flare. But, I'm not sure which to choose. Any advice?

    I know dmso has helped a lot of folks, but it just seems so toxic to me and painful. The rescue instill, while gentle and soothing, needs to be done more frequently and I'm not sure he'll go for home instills. He's a nice uro and really does listen, but he's not at the forefront of care by any means.
    mom_in_ma

  • #2
    I've made up my mind, I'm going with the rescue instills. I called the doctor and they'll call back to schedule an appointment. Wish me luck! Ugh, this is so scary.
    mom_in_ma

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    • #3
      Good luck Robin, I haven't done the instillations myself but I like you have read all the postive posts about how they help so many. From what I understand the DMSO can be very irritating at first, that is the one my uro said he would try if the meds he gave me didn't work. From what I understand the rescue instillations are supposed to be more soothing. If you're in such a major flare I would guess that the resue instill would probably be calming to your bladder but it's different for everybody I guess.

      My uro looked at me like I was crazy when I told him I had read the DMSO instills could be painful. He said that his patients had handled it well but if it was uncomfortable for me then we would discontinue them.

      I hope that you can get the rescue instill soon and start to feel some relief.
      Christine



      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus

      Comment


      • #4
        1st Rescue!

        I got my first rescue Instill this afternoon. Man what a relief. But I did notice that my IC belly has gotten bigger since then. Is this a bad sign? Is this gonna hurt really bad later? Right now I am much relieved but Not sure how it's gonna go later after it wears off. Nurse told me 8 hrs Is that accurate?
        Mia Sowell
        Fort Worth, TX
        2 Kids
        Ethan (3)
        April (17)
        Husband Eric (Very Supportive)
        Clinically Dxed 04-16-07
        Symptoms Since 2004

        Meds:
        Elmoron 400mg 2x Day
        Atarax 50mg 1x Day
        Xanex .50mg 8 hrs As needed
        Vicodin 5/500mg 4-6 hrs As needed
        Xanaflex 4mg 1x Day
        Urelief Plus 6 hrs as needed for Bladder spasms
        Prelief as directed

        Comment


        • #5
          Sorry meant to say in the previous post that I would recommend it just for the instant relief alone. So what if the pain comes back at least I got relief for a while. Still not sure how long it will last
          Mia Sowell
          Fort Worth, TX
          2 Kids
          Ethan (3)
          April (17)
          Husband Eric (Very Supportive)
          Clinically Dxed 04-16-07
          Symptoms Since 2004

          Meds:
          Elmoron 400mg 2x Day
          Atarax 50mg 1x Day
          Xanex .50mg 8 hrs As needed
          Vicodin 5/500mg 4-6 hrs As needed
          Xanaflex 4mg 1x Day
          Urelief Plus 6 hrs as needed for Bladder spasms
          Prelief as directed

          Comment


          • #6
            What did your doctor say about doing self instills? Sounds like the rescue instills may be helping you.

            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

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            • #7
              gonna ask about it when i go tom for another one.
              Mia Sowell
              Fort Worth, TX
              2 Kids
              Ethan (3)
              April (17)
              Husband Eric (Very Supportive)
              Clinically Dxed 04-16-07
              Symptoms Since 2004

              Meds:
              Elmoron 400mg 2x Day
              Atarax 50mg 1x Day
              Xanex .50mg 8 hrs As needed
              Vicodin 5/500mg 4-6 hrs As needed
              Xanaflex 4mg 1x Day
              Urelief Plus 6 hrs as needed for Bladder spasms
              Prelief as directed

              Comment


              • #8
                I have been doing home rescue instillations since 2004. They work for me. I don't have any reason to look for any other treatment. I'll be glad to try to answer questions you may have about instillations. I know how apprehensive I was in the beginning.
                TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                I post to encourage and offer total support for rescue instillations.
                Find me on facebook: L. Clark Thomas
                Louann

                Comment


                • #9
                  I started the heparin instills last fall. I was so afraid I threw up the first time!
                  But after a couple of times, I began to see some relief, and after the series of six ended, I have stayed at a managable place, between the instills and my pain meds. (I can't take Elmiron). I go back once a month and get one, or as needed in between. They are fantastic, and I was in the worst flare I have had in all my years of fighting this when I started them!
                  Hope they work for you!!

                  Comment

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