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  • Chlorpactin

    My uro keeps suggesting a 1% chlorpactin instill and I have tried everything else for pain and what not, this is a last end treatment. I want to know the success rate, how much pain you were in, how well did it work, etc.

    He told me I'd be in a lot of pain after for the next few days, I don't work so it'd be ok.

    Thanks.
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

  • #2
    Jess,
    I have never had this treatment but my understanding is that it rates about like Silver Nitrate installs in the pain catagory. I did have those in the 70's and after that swore I would never see a urologist again unless I absolutely had to. I didn't either until late 80's, I just lived with going to the bathroom 20-40 times a day.

    That being said if you look in I think it might have been a guest lecture series or something on this website there was a discussion about the use of Clorpactin how it was really meant to be used and the concentration. I don't know if many have tried it but the Silver Nitrate and Clorpactin are considered 2 of the older less used treatments.

    I hope that helps, thats the best I can tell you but I will never, ever do Silver Nitrate again, that is how much it hurt me, but that could just be me.

    Good Luck,
    Jolene
    Jolene

    "Life is what happens when you are making other plans" John Lennon

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    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

    "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

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    • #3
      Thanks for your help, Jolene.
      Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

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      • #4
        I found it! If you go to http://www.ic-network.com/guestlectu...ranscript.html you can read about it.

        Hugs,
        Donna
        Stay safe


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        [3MG]

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        • #5
          Wow that was very informitive and interesting to read. My two uros are on split sides about this issue, so I am not sure which way I'm going. I did ask, and it is the lower perecnt one, that they use. Thanks for the article.

          Hugs and love,
          Jess
          Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

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          • #6
            I have tried just about everything I would get some relieve from various treatments no more than 30% relieve. A couple of month ago I went for chlorpactin. I had it instilled during a hydro.When I first woke up It was bad but after a few glasses of water to flush myself out the pain wasn't to bad.(I was in lots of pain anyway) After a week I could say I was 80% better the first real releive in years. I it been a couple of months now the symptoms are slowly starting to come back, it is no cure. Would I do it again YES.I had a great time at christmas and now the symptoms aren't bad just annoying. I know it is a old treatment lots say don't do it but for me I willing to try anything and I am glad I did

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            • #7
              CB you are testiment though that maybe this treatment isn't so bad if done the way it was meant to be. That is why it is so good that everybody research both the good and bad of every treatment. This is a treatment that has gotten a bad rap, but probably hasn't been done the way it was suppose to be for years by a lot of Dr.s.

              I do know this from looking at my old medical records from when I was diagnosed in the mid 70's, Chlorpactin was what my Dr. wanted to use for an instill for me when I was in the hospital, but it wasn't available. So he used Silver Nitrate instead. It almost sounds from what I read in the guest lecture series that the Silver Nitrate is harder on the bladder than the Chlorpactin used at the right installation dilution.

              Jess, and anyone else thinking about this treatment, I would make sure to print off the info from that series if I were considering this treatment and discuss it with your Dr. Don't be afraid to speak up for your rights as a patient. That is one thing I have learned having IC for 29 years now.

              Jolene
              Jolene

              "Life is what happens when you are making other plans" John Lennon

              IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

              Information for Patients can be found here.
              http://www.ic-network.com/patientlinks.html


              Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




              Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

              "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

              Comment


              • #8
                Clorpactin is not like Silver Nitrate at all. Unfortunately, it is often listed at the end of possible instillations along with the Silver Nitrate which was caustic.

                I am a success story for Clorpactin. Based on the info from this site, my uro's nurse instilled a 0.1% (note...a fraction of 1%) solution into my bladder once a week for 2 weeks. Then, the next weeks were with 0.2%, as recommended.

                The thing we noticed, that is not explained well, is that after the solution is instilled by gravity feed of no more than 30cm, that you start timing it. I held the solution in for 2 - 3 minutes, then the nurse let it out. We waited for 3 - 5 min. before the next instill; after the second instillation was all in, we timed it again for a 2 to 3 minute hold. The nurse let that solution out. Then a wait time of 3 - 5 min. before the third instillation. After that the third and final instill ....as soon as the third instillation was all in my bladder, the nurse removed the catheter. During that 2 - 3 min. hold time, I got up and dressed, then voided the clorpactin out in the uro's bathroom. toilet

                Treatments took about 25 min. total. I had a total of 10 treatments, one weekly. From the second weekly treatment of 0.2% when we used the hold, wait time, hold, etc. procedure....I noticed a difference in pain level. It was slight at first. I found that standing was more comfortable...I could remain in that position for a few minutes longer without significant ramping up of pain. By the last week, there was a significant improvement. I still take all my meds, (Elmiron, Vioxx, Neurontin, Vicodin) and I have Interstim, but I can lead a more normal life for at least a few hours a day. lmao

                The pain is not gone, but it has decreased enough so that the 375mg of Vicodin taken in late afternoon actually "kicks in". Sometimes it nearly takes the pain away. For a few hours at least each day the pain is down enough where I can visit my grandchildren, drive to the store, etc. I am very pleased and so is my uro. He told me Jan. 13th that when the effect wears off, we will do another series.

                Last treatment was on Dec. 23rd., so the effect is holding, though I am having a little more pain, yet, I'm not complaining....To be able to feel like a real human being....to be able to cook a meal, do some laundry, drive for 10 minutes, play a game with my parents, etc. My husband and I are so grateful to this site and to Jill for her interview with Alfred Globus, and to my uro for letting me pursue this treatment. He has started others based on my experience.

                Bottom line....Clorpactin may be worth a try...It does not burn like DMSO, and, to me, is not as scary as BCG. For those who are afraid of instillations, think of this....at least the medicine goes right to the site of pain and frequency.

                Sorry to write such a long post....now I realize that this should be a new topic. {{sigh}} banghead

                Best to all,
                Positive thoughts and prayers that new treatments for IC will reach all who struggle with this disease,

                SusanC

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