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  • #1

    questions about dmso

    I will be starting DMSO treatments next week. I am extremely scared because catherization is such agony to me as I'm guessing it is for most people with IC. I pretty much asked my uro to get this done because he said the only thing left for me to do is interstim and i really have mixed feelings about that one. Anyways my doctor didnt inform me about anything about the procedure and only told me it would be a 2 hour appointment. My question is what can I expect at the visit. What exactly happens and should i expect to be in major pain until all 6 instillations are done. I would appreciate anyones imput, help, or suggestions. Thanks much!

    Allison
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  • #2
    HI Allison,
    My mom has ic like me, she did do the dmso treatmnet and she said they did hurt, but they also put her in remission. She had to quit because I guess after using the for so many years it can caus blindness... then she did hydros every 6 months..
    brat
    'The will of God will never take you where the Grace of God will not protect you.'

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    • #3
      There are many treatment options for IC. I am currently on a monthly schedule of DMSO treatments. When I started DMSO, I had eight weekly treatments, then went to the monthly schedule.

      My first few treatments were painful and my uro did prescribe pain medications for me. I was ready to give up on DMSO when I slept all night one night. That was enough motivation for me to continue.

      I'm not sure why the appointment would be a 2 hour one, but he may plan to keep you there until you void after the DMSO. When I have a treatment I go in, have the DMSO instilled, and head for home.

      One of the possible side effects with long term use, per my Physician's Desk Reference medication book, is cataract type eye changes.

      Have you read the information in the Patient Handbook? It's at http://www.ic-network.com./handbook/ and you'll find information there about various treatment options.

      Sending healing thoughts,
      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

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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

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      • #4
        DMSO helped me alot. Typically after the first 3 or 4 I would start to see results. I would do a series of 6 or 8 and then move to every other week and then to once a month. After more than a year they haven't worked as well this time around and I am trying something different. But one thing I learned is to hang in there if at all possible and give it a fair chance. Like Donna, once I started seeing results it was motivation to keep going!
        Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
        _____________________________

        DX: IC - November 2002 after hysterectomy
        Interstim implanted March 2006 - died May 2011
        Interstim replacement June 2011
        Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
        Docs: Pain management doc, urologist, family practice

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        • #5
          I just finished my 10th DMSO treatment. It has reduced my bladder pain. The pain is not gone, but reduced. I needed to take the generic of vicondin for pain, because it was extremely painful to hold the cocktail in my bladder without it. It hurt for the next 24 hrs after treatment, but then it would start to feel better. I hope it helps you.

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          • #6
            Hi Alison,
            I went into remission for about 5 yrs. I thought it was from the dmso but I am not sure b/c I think I am going into remission now. I had DMSO for years and always thought it was effective. I also must say that it did not knock me out with pain but then I think ic people just handle pain better. My uro always said we never know when we have too many. After last one 3yrs. ago I instantly began to vomit. I was in hosp. for a week and it poisoned every organ in my body. I threw up for 12 days so just be careful.
            Love,
            Ginny

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            • #7
              Allison,

              DMSO can be very helpful. I was petrified, I didn't want anyone going down there! My uro told me the goal was to hold cocktail for 20 minutes for full benefit and recommended I stay in office until I voided. That way I wouldn't be stuck in car and away from a toilet! He also suggested I take my valium 4mg. and pain meds. 1 hr. prior to appt., that definitedly helped a lot, I was so nervous. So, for me, that definently helped a lot. Prior to procedure I said "stop" what are you going to do?" After he explained, let me look at everything and told me to take some deep breaths like child birth, I hardly felt a thing and before I knew it he was done. I experienced no pain, just uncomfortable for a few seconds. It was hard to hold cocktail and I think I just made about 12-15 first time. I was uncomfortable for a few days but every week go better. The 4th treatment was the best because when I awoke next morning I didn't have all the pain from the dmso that I'd experienced with the other dmso.

              I'm very happy with dmso and recommed highly. Don't forget to take the drugs to relax, get a ride and know that it will be ok.
              kissing angel lmao
              Best wishes to you,
              Julie

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              • #8
                Hi Allison,

                I am newly diagnosed (cysto/hyrdo on Jan 7)& had
                my first DMSO/Heparin instillation on Friday (1/30). It was not pleasant, but not as bad as I feared. My cysto/hydro was a disaster, and I was so afraid the DMSO would be, too.

                I see BayCare Urologists here in Green Bay. I have not yet decided if I am at the right place or not--my only concern is their reluctance to treat the pain. For example, when I went for my instill on Fri, I asked for lidocaine to numb the urethra, but they refused, saying that they find it causes more problems than it helps. When I asked how to manage the pain after the instill, they said to take Tylenol, warm bathes and heating pad. Luckily, I did have Urelief (its like Pyridium)so I took one on the way home, which greatly relieved the pain in the urethrea.
                I have needed to take pain meds when I go to bed at night, luckily I had some left. They will not prescribe anything else for pain, as they told me
                "I need to focus on healing, not pain". I am very appreciative for all the info on here and in the books I got with my newly diagnosed kit, as I feel very informed when it comes to pain mgt. I understand their concerns about some people becoming addicted, etc., but what I read says very few chronic pain sufferers become addicted, if they are only taking meds when needed to be able to function--not to escape their lives. That's all I want--like all of us, I want to be able to manage the pain, get enough sleep so that I can work and fuction. Anyway, I will be following up with my Dr and speak to him more about this.

                I immediately went home from my appt and soaked in a warm bath with baking soda, and sat with the heating pad on my belly for a few hours. Fri night I was up 8 times, Sat I was up 7 times and
                last night I was up 6 times (more severe urgency at the beg of the night on Sunday). 6 times is pretty typical for me. My overall assessment after just 1 treatment (& they said it will take at least 6 before we'll know if it will help me) is that the urgency/frequency is a bit worse, but the pain seems better--its not as constant and seems to come in waves now. I am hopeful!!
                I held in the DMSO/heparin for 15 min-it feels like they filled me up with hot water--there's some burning, but it wasn't real bad for me.
                If you go to your appt alone, I suggest taking a book or magazine to keep your mind occupied. My hubby went with me for the first one, and talked to me while I paced the office.

                All in all, I was greatly relieved it did not cause really severe symptoms. They stressed to me the hard part about IC is treatment is so individual. Also, I drank even more water than I normally do.

                Pls let us know how you are doing. Anytime you have questions, pls let me know.
                I would NEVER have gotten through the last several weeks if it wasn't for all the wonderful people whom I "met" through the message boards.

                God Bless You,

                Stacy

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