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  • DMSO and concerned

    Hello, All--

    My doctor wants to try DMSO before Elmiron because he says that the side effects aren't as bad, but I am scared due to all of the things I've been reading.

    So, people on average, if they do feel relief do this as a monthly thing or do some people just go into remission?

    I know that everyone is different--just want some feedback.

    Thanks.

    Maria



    Current medication: Soul-searching

    Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.





  • #2
    Hello, I had the DMSO instill's once a week for 7 or 8 weeks. I would say I got relief from the first 7 then nothing. I'm scheduled for my first hydro this afternoon. Good luck and I hope you find a treatment plan that works for you.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily

    Comment


    • #3
      If you decide to have the DMSO I suggest you verify that the solution instilled is no more than 25% DMSO --- Rimso 50 (brand name for DMSO) is 50% DMSO so it needs to be further diluted by at least 50%.

      I hope it helps.

      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


      • #4
        Thanks

        Thank you. Good luck Greeneyes!!!

        Donna, you're great.
        Maria



        Current medication: Soul-searching

        Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




        Comment


        • #5
          I had DMSO once every two weeks for 5 times.. I would have gone in for the 6th but I had a hydro/cysto done.. I did not notice results until about the 3rd one.. and I did smell like garlic for the first 36 hours or so after each one...Not everyone has that symptom though.. I have a very small bladder so it was hard for me to hold it for 15 mins but I did it! I would do it again if and when I needed to.. right now bladder is doing fine. Latest Uro appointment my URo..said any time I have problems that I could get a DMSO treatment or if I wanted I could try Cystastat..
          I might add I had a bit flaring after each one for a day or two..
          all the best to you...
          God brought me to it, He will bring me through it!!!

          Diagnosed 2003
          by cysto/hydro
          Elmiron took almost a year- made me sick, caused diarrhea
          Pyridium -Made me sick
          Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
          Tried DMSO instill- had 5 out of 6
          Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
          Cysto/hydro April 6th 2011-- on expansion only hold one cup
          IBS/ IC
          High blood pressure meds and Crestor
          Metformin (prediabetic)
          Sinequan (depression)

          Comment


          • #6
            Done.

            Hi, Girls--

            I had my DMSO done today after work (school) and it went well. They used 1/2 DMSO and 1/2 Lidocaine--no burning going in, out, or now...2 hours later.

            I'm really hoping that this could be a potential treatment.

            Thank you all for your input and I hope that you're all having a good day!

            Maria



            Current medication: Soul-searching

            Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




            Comment


            • #7
              Happy to hear that DMSO worked for you, but I don't understand how you got DX'D based on just your symptoms. You never got a cysto or hydro done? I agree with Briza. A hydo would be a lot less abrasive. I suppose The only thing that matters, is it is working for you. The DMSO made me a lot worse.

              Good luck
              Last edited by hoping4acure; 06-20-2011, 11:34 AM.
              Minds are like parachutes-they ony function when they are open.
              -Thomas DeWar-



              ICN Newbie Volunteer


              *ICN 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
                Hello everyone, if I'm not mistaken the new guidelines that came out you can dx with symptoms alone?????? glad the treatment worked and I hope it keeps you pain free.
                IC diagnosis 3 weeks ago.
                Vesicare 10 mg once daily
                IBS and Gerd-Zegerid
                IC diet
                Elmiron 100 mg three daily
                Hydroxyzine 25 mg at night
                Amitriptyline 10mg at night
                Diovan 60/12.5 daily
                Topral 50 mg daily
                Zoloft 100 mg at night
                Klonopin .5 twice daily

                Comment


                • #9
                  I was diagnosed through symptoms and through exclusion. I had ultrasounds, several CT scans, IVP, physical exams, cultures, UA, bloodwork, etc. and after my one and only UTI cleared up, nothing ever showed up in tests but I still had/have extreme frequency and the feeling like I still have a bladder infection. After talking with my uro and answering all her questions and providing a log of my voiding history, etc., she diagnosed me with IC. When I asked about the hydro/cysto she said that it can offer proof of IC in some cases but in others, the bladder may look normal but the patient can still have IC. Same with the PST. She said those procedures are painful and she didn't want to put me through all that after we'd already pretty much covered everything else it could be.
                  Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

                  Current medications/treatments:
                  Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

                  Previous medications/treatments:
                  Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

                  Comment


                  • #10
                    I guess I was lucky.

                    I was able to not have the hydro done although my doctor suggested that it might help, but I have heard of too many complications, and with my work schedule, I couldn't risk having any more days off.

                    This is happening at such a crazy time. I just lost my job, so I'm hoping to interview again soon, and my husband and I want to try for a baby. I'm stuck with the decision of trying Elmiron for a few months and quitting or just not trying at all.

                    ??? Thoughts?
                    Maria



                    Current medication: Soul-searching

                    Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




                    Comment


                    • #11
                      Briza, I wished all doctors diagnosed on symptoms alone, when I had an in office cysto i was in terrible pain for weeks after, although I will say the hydro has helped in going to the bathroom over 20 times aday.
                      IC diagnosis 3 weeks ago.
                      Vesicare 10 mg once daily
                      IBS and Gerd-Zegerid
                      IC diet
                      Elmiron 100 mg three daily
                      Hydroxyzine 25 mg at night
                      Amitriptyline 10mg at night
                      Diovan 60/12.5 daily
                      Topral 50 mg daily
                      Zoloft 100 mg at night
                      Klonopin .5 twice daily

                      Comment


                      • #12
                        A lot of people are helped by DMSO. I hope you will be among them.


                        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


                        • #13
                          I too was diagnosed based on symptoms. I went about 4.5 years with no major problems. Last fall, I started flaring and have pretty much been on every common medication except Elmiron because I can't afford it. I had a cysto/hydro in April, but have the feeling that my bladder looks fine since my uro told my Mom when I came out of surgery that everything looked good. When I went in to see my uro about a month ago, I was feeling great. She said if I had any more problmes that My the next step would be DMSO. Why would she use that if it's so old school? I saw my family doc this week for my yearly check up and told him that I've been flaring for a little over a week. He was surprised to hear that since I'd had the hydro not that long ago. I told him about the possible DMSO and he agreed that that would be the next step or maybe even another hydro. I started taking colostrum about a week ago to see if that helps. My doc said that was fine to take it and that it very well could help. But, if I continue to have problems, I am to give him a call. I don't feel like going back to the uro since I am only getting short-term relief each time they try something new. Perhaps my family doc can have me try something else. I"m just getting a little frustrated. I really had high hopes for the hydro, especially since I was feeling so good. I am concerned that the DMSO would just be another failed attempt. I also am concerned about the expense and how I'll feel afterward. I have a job that doesn't do days off (farming). Any info, advice, reassurance, etc would be greatly appreciated.

                          Comment


                          • #14
                            just started dmso

                            i just started my dmso last friday and my urgency is thru the roof! pain as well. I am taking next week off then restart. they are doing dmso, heprin, sodium bicarb and kenalog. i really hope this works.

                            Comment


                            • #15
                              My IC pain has been horrible during the past month or so (nothing helped...not even strong meds like Vicodin...felt like I was going crazy)...had a cystoscopy with hydrodistension last week, and my pain has eased up so much already.

                              I also had bladder instillations, and I thought they were much more invasive and painful than the cystoscopy.

                              I would seriously consider having the cystoscopy with hydrodistension (just make sure they put you under)...the stretching of the bladder seems to help people with the pain (I'm one of those lucky people), so it wouldn't hurt to try it if your pain gets worse.

                              Comment

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