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  • DMSO OR "rescue" instillation??

    Hi,

    For some reason, I cannot view any of the posts in this group, and it tells me there are 758 posts on the subject. So, I'm going to create my own. I am newly diagnosed with IC. I introduced myself, and told my story, about a week ago in that section of the forums.

    I visited my Uro today. She feels the next step for me is to do a series of instillations. She seems to be a bigger advocate and supporter of the DMSO over the "rescue" instill, which she calls a cocktail, of heparin/sodium bicarbonate/lidocaine. Her reasoning seems to be that it has been around longer, and is the only FDA approved treatment for IC. She said she feels like it's effective for approximately 80% of people, but it could be as low as 50%. She said that the rescue instill has about the same success rate. I told her I have read all kinds of horrible things about DMSO on here. Particularly the burning. She said the burning usually only occurs if it is held in more than 15 minutes. But my OB/GYN wants me to see a urogynecologist, and says that they do the rescue instill, so she leans that direction. I am extremely confused as to which one to try.

    It sounds like you have to do several of either one before you notice any improvement? Is that true? Or have some of you noticed improvement after the first one? She is recommending one a week over a period of 6 to 8 weeks. She said that some people cannot handle one a week and they do one every other week. So, it sounds like it's painful?

    I want to do whichever one promotes "healing", and/or whichever will be least likely to cause me pain. Please share your experiences with both, good and bad.

    Do they help you to become less sensitive to your food triggers?

    Thanks

  • #2
    Re: DMSO OR "rescue" instillation??

    Hi

    I haven't had any instill's yet but will follow this post as also interested in same information, it is all so confusing

    Comment


    • #3
      Re: DMSO OR "rescue" instillation??

      Hi

      I haven't had any instills yet but will follow your post as also interested in what everyone has to say and please let us know how you go.

      Comment


      • #4
        Re: DMSO OR "rescue" instillation??

        My uro told me a few weeks ago that they still use DMSO all the time and he had not heard of any problem with it damaging the bladder. He is not an "IC specialist" or anything, but he's been in practice a long time and they have 600+ IC patients. I don't know what to think either.
        Jane
        Diagnosed 1/7/14 via cysto/hydro

        Current Treatment:
        10 mg amitriptyline, DH Aloe Vera

        Used During Flares:
        Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

        Practicing bladder training and stress control (hot baths, pelvic stretching)
        Recently tried PT, do not appear to have PFD

        Things that have not helped in the past:
        Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

        Also have migraines and IBS

        Comment


        • #5
          Re: DMSO OR "rescue" instillation??

          That is what my uro told me too.

          I had 1 DMSO treatment after which I had a very bad flare for a month afterwards. After a month th flare started to improve but took another month to get back to where I started.

          I will never do another treatment with DMSO.
          My are with you all. May you all find a way to peace and joy in your lives.

          Comment


          • #6
            Re: DMSO OR "rescue" instillation??

            If you go to http://www.ic-network.com/forum/foru...-instillations you can read about the potential for problems created by DMSO. I was treated with DMSO for several years when it was first approved. My experience was eight weekly instillations to begin with. The first two or three (I don't recall exactly; it's been a long time) caused me pain for several days each instillation. I was ready to quit when I woke up one morning and realized I had slept through the night. That was enough to convince me to continue --- and my uro prescribed pain meds. I then went to treatments every other week, then monthly --- until they stopped working as well. At that time we hadn't learned about rescue instillations.

            The benefit of rescue instills is that they can bring on relief very quickly. I know of some ICers who do those at home even daily or more often. Neither is a "cure" --- you just have to make a choice of which sounds better to you. And remember that you can always change. Just because you start with one or the other doesn't mean that's a permanent treatment for you.

            Warm 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

            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


            • #7
              Re: DMSO OR "rescue" instillation??

              Hi mother goose,

              Sorry, for some reason I stopped receiving email notifications that people replied. This is what I am terribly afraid of. Getting set back. Especially by month! That is awful! I'm so sorry.

              Comment


              • #8
                Re: DMSO OR "rescue" instillation??

                Thanks, Donna. I know you have been here a long time. Do you know why I cannot view any of the other posts on this subject? It says there are several hundred posts on the subject, but when I click on it, there is nothing here except for the one post about DMSO and how harmful it can be.

                Comment


                • #9
                  Re: DMSO OR "rescue" instillation??

                  My two boys 99,

                  Yes, my urologist seems to feel like there is nothing wrong with DMSO and her patients have never had bad reactions. She said sometimes they will experience burning, but only if they leave it in their bladder for more than 15 minutes. I am so confused by this because if you read here, that doesn't seem to be the case for many people.

                  I found out that the rescue instill cost $100 less than the DMSO installation, so I think if I try one I will try that one, because I do not want to risk being in so much pain from DMSO

                  Comment


                  • #10
                    Re: DMSO OR "rescue" instillation??

                    Originally posted by gpfin0216 View Post
                    Thanks, Donna. I know you have been here a long time. Do you know why I cannot view any of the other posts on this subject? It says there are several hundred posts on the subject, but when I click on it, there is nothing here except for the one post about DMSO and how harmful it can be.
                    If you go to that forum and scroll down to where it says "Thread Display Options" and reset that to "Beginning" you will be able to see those posts. Let me know if it doesn't work for 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

                    Comment


                    • #11
                      Re: DMSO OR "rescue" instillation??

                      I would see a urogynecologist. They are much more up to date with treatments for IC.
                      Elmiron is a prescription medicine that has been very effective also.
                      My personal experience with rescue instillations have been wonderful. They have controlled my IC since I started them about 10 years ago.
                      I have never had DMSO but it the results are about the same I would go with the rescue instillations. I do feel they have fewer side effects than the DMSO based on the post I have read on the forum.
                      Beginning treatment for me was 3x weekly for 3 weeks. At the second treatment I watched while the nurse as she did the instillation. The 3 installation I did. I have been doing home instillations since the treatment began. Now I need instillations about 1 time a week during seasonal allergy seasons and only every few months for the rest of the year.
                      Last edited by L. Thomas; 02-23-2016, 01:31 PM.
                      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


                      • #12
                        Re: DMSO OR "rescue" instillation??

                        Hi Donna, I do not see anything that says "thread display options" I am viewing this website from my phone. Do I have to do it from a laptop?

                        Comment


                        • #13
                          Re: DMSO OR "rescue" instillation??

                          L Thomas,

                          Yes, I have heard of elmiron, but it is over $600 a month, and I have heard it's basically a coin flip as to whether or not it works for people, and I can take a long time to work, even if it does. And it seems like so many people have negative side effects.

                          I have found that I can control my symptoms for the most part through diet. I also started Detrol two weeks ago, and that seems to help. I'm also on Elavil, but my dosage is so small, it's hard to know whether or not it's really doing anything. When I eat the wrong thing, it does nothing to help my pain. I guess I'm not sure how it is supposed to work.

                          Thank you for sharing your experience with the instillations. I do think I'm going to opt for the rescue instill, over the DMSO. I haven't done it yet, because I'm not sure if the catheter is going to cause me more pain, and if I can control it through diet, I'm wondering if that is the best thing to do? Or will the instills help me to be able to eat foods that I currently cannot eat? Like, do they help your bladder to heal? Or do you still have to stay away from those foods? Because, to me, it would be worth it to do the instills, if that meant that I would be able to heal faster and eat the foods that I want to eat sooner. But, if not, I'm not really sure what the advantage of doing them would be. is it just for people when they are unable to control their pain through diet? I wish I could figure out how to read all the other threads on this subject. It's frustrating that I can't see them.

                          Comment


                          • #14
                            Re: DMSO OR "rescue" instillation??

                            Originally posted by gpfin0216 View Post
                            Hi Donna, I do not see anything that says "thread display options" I am viewing this website from my phone. Do I have to do it from a laptop?
                            That's a possibility. You might need a computer for all of the things to function.
                            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


                            • #15
                              Re: DMSO OR "rescue" instillation??

                              Originally posted by gpfin0216 View Post
                              L Thomas,

                              Thank you for sharing your experience with the instillations. I do think I'm going to opt for the rescue instill, over the DMSO. I haven't done it yet, because I'm not sure if the catheter is going to cause me more pain, and if I can control it through diet, I'm wondering if that is the best thing to do? Or will the instills help me to be able to eat foods that I currently cannot eat? Like, do they help your bladder to heal? Or do you still have to stay away from those foods? Because, to me, it would be worth it to do the instills, if that meant that I would be able to heal faster and eat the foods that I want to eat sooner. But, if not, I'm not really sure what the advantage of doing them would be. is it just for people when they are unable to control their pain through diet? I wish I could figure out how to read all the other threads on this subject. It's frustrating that I can't see them.
                              I feel the pain from the catheters is caused by 2 things: the size of the catheter and advancing the catheter too far. I use an 8fr pediatric feeding tube as a catheter. The ones used in MD/hospitals is somewhere in the neighborhood of 16-24 fr, 2x or 3x the size of the one I use. There is a mark on the catheter to indicate how far it should be inserted. When the catheter is inserted that far it may hit the back wall of the bladder and that causes pain. When you self-catheterize you only advance the catheter until urine starts to flow out the catheter. I don't really know about being able to eat "forbidden" foods. The only thing I have to watch is cranberry juice.

                              Dr. Dell says there is no cure at present for IC, only effective treatment. I urodynamics test just prior to beginning instillations and the IC was visible. It would be interesting to see the lining after 10+ years of using rescue instillations. From what I read in the forums most have had pain with DMSO but not with rescue instillations. I have never had DMSO but seems I read you can't do them as frequently as rescue instillations. The advantage of home rescue instillations is that you can do them anytime basically anywhere. With DMSO you have to go to the MD. It may be when you first start a flare an instill calms the bladder so it doesn't get flare more. Can you see the links in my signature for additional information?
                              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

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