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  • Had my Uro appt today and he started DMSO

    Well I had my appt with my uro today. I wasn't supposed to go back until July but I was having alot of pain again and felt like I couldn't wait.
    He didn't want to up the Elavil yet but wanted to start DMSO. I have read some good things and some bad things about it. I know it's been really helpful for some and really painful for others.
    Well it wasn't fun, that's for sure. They used some of the ladocaine to numb my urethra before hand which was supposed to stop the cath from hurting and keep it from hurting when I had to void it out afterwards.
    The cath still hurt a lot and boy was it hard to hold it in for 15 minutes. That garlic taste was nasty when I voided the DMSO out. I'm pretty sore and achy. He wants to see me next week to see how the first one went and to probably do a second one.
    I am willing to try anything to get this under control but I'm kinda nervous about this DMSO.
    He said that he wanted my GP to handle my pain management from now on and I called him and he did call me in some more vicoden. Ugh, I hope this works but I'm not really very hopefull.
    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

  • #2
    I sure hope this works for you! I hope you get some relief form that pain!

    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

    Comment


    • #3
      **Fingers crossed** that this is the answer for you. Keep us posted how your feeling.

      Comment


      • #4
        Thanks girls, my bladder is still pretty sore but not horrible. I'm just nervous because I was reading that it can cause damage in some cases. I didn't expect him to start it today. I think I'm going to ask the percentage of DMSO that he uses when I go in on Monday. Depending on what he says and how I feel the rest of this week will probably determine if I keep it up or not.
        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


        • #5
          I refused it due to potential bladder damage. Under the normal dosing I guess the chances are rare.

          Erika
          IC diagnosed officially via cysto/urodynamics 1/26/07

          Grade II Endometriosis diagnosed via lap 12/11/07

          "Fall down seven times, Stand up eight."

          "Life is a tragedy for those who feel and a comedy for those who think."

          Current Treatments:
          Interstim Since 5/25/07!
          Birth Control

          Comment


          • #6
            Good luck Christine,
            I am not one that can not do the instills do to the fact that what happened to my bladder during the hyrdo/cysto.. I sure hope it helps you

            Oh what did he say about the swelling?


            Ronda
            Last edited by leelee88; 06-20-2007, 03:57 AM.
            Hugs
            Ronda

            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


            Link to Patient Handbook:
            http://www.ic-network.com/handbook/

            Diet Reference Sheet:
            http://www.ic-network.com/diet/icndi...tsheet0909.pdf

            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

            Meds I have Tried:
            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
            Lexapro< Bad reaction to this med!
            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

            Dx With IC in Nov 2006 with Hydro/Cysto
            Hydro/Cysto Caused Bladder to Rupture.

            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



            ICN 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


            • #7
              Hi Christine and Gals,

              I have been treated with 6-8 week cycles of DMSO at least twice a year with wonderful results overall.....Christine, if you can tolerate the first few, you may notice a dramatic increase in feeling better after the 4th or 5th instill. I know there are some people here who have had bad experiences with the dmso - but I believe if the dosage is kept where it should be, that there is little chance of bladder damage....talk to your docs if you have any great concerns, and feel free to PM me if you have any questions!

              Good luck - I'll have a good thought for you!!

              Beth
              IC diagnosis 1999
              Meds: Elmiron
              hydroxyzine hcl
              DMSO as needed
              valium as needed
              librax 3x day

              TENS therapy



              Thanks to all on the boards - YOU have helped more than I can say!



              A person's true wealth is the good he or she does in the world.

              Comment


              • #8
                Oh thanks Beth, it's good to hear from someone who has had good results. I'm not sure what I'm going to do from here, I guess it depends on how my bladder feels the rest of this week. It's not very happy with me now but that may change after today.
                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


                • #9
                  Christine - Just wanted to say that I am sorry that you are not feeling well and hope that you will be feeling better soon...Linda
                  Sudden onset of UTI like symtoms on Dec 27, 2006.
                  Diagnosed with IC on March 12, 2007.
                  Current Meds: 50mg Elavil
                  "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

                  Comment


                  • #10
                    Hi Christine,
                    I had a series of 6 once a week instillations in the summer of 2004. The first couple of treatments were rough, but after that they got easier & I did have significant symptom reduction from them. I did once a month "maintenance" treatments for a year after that. They reduced my symptoms a lot, but...

                    In summer of 2005, I did decide to try home heparin instillations to see if I could feel even better & I did.

                    BUT I didn't regret trying the DMSO because the instillations are less frequent than the home heparin & the insurance company paid for them without hassle (the home instills took extra paperwork & time spent hassling about "medical necessity".)

                    I hope that you get good results from them & they bring about better days for you soon!
                    Kadi

                    -------------------------------------------------------------
                    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.
                    ------------------------------------------------------


                    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                    Source - Pinterest
                    "


                    Current treatments:
                    -IC diet
                    -Elavil 50mg at night
                    -Continuous use birth control pills (4-5 periods/year)
                    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                    -Pyridium if needed,
                    -Pain medicine at bedtime daily, as needed during the day several times per week
                    -Antibiotic when doing an instillation to prevent UTI
                    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                    -Dye Free Benadryl 50 mg at bedtime
                    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                    -Managing stress= VERY important!
                    -Fur therapy: Hugging the cat!

                    Comment


                    • #11
                      Oh Thanks Kadi!
                      I'm just kinda freaked out once I read the info stating that a 30% solution can cause permanant damage to the bladder muscle and that they shouldn't use anything stronger than 25% solution. I think they used it straight from the bottle which would have been 50% from what I'm reading.
                      I do seem to feel better today, don't feel my bladder as much but I'm going to ask next week what percentage they are using and if he is willing to do it at 25% instead of the 50%.
                      I asked about rescue instillations and he said that this would be his next step and then there would be other things to try if this didn't work for me.
                      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


                      • #12
                        Hi Christine.
                        I hope the DMSO treatments help you. I personally did not do them, I did research also and did not feel I wanted to go that route right away. I am doing the heperin, lidocaie,saline instills. They help me alot, but lately I am having alot more pain.
                        I would make sure he is using a low dose of the DMSO, I believe no more that 25% or something like that. Some doctors use 50% and I think that is insane. I would play it by ear. See how you feel by the next visit. If you are feeling ok, then maybe try it again and just see how it goes. Your body will usually tell you if it is not happy. I am keeping my fingers crossed for you.
                        Jen

                        Comment


                        • #13
                          I think that's my fear Jen, that he's using the 50% and it might actually be helping me. I just don't feel that the 50% is safe after reading all of the info about it last night. I guess I'm afraid it's going to help but will want the 25% and he won't want to do that or something.
                          The only way I'm going to know is to wait and ask on Monday when I go back. It did scare me though to read the info about the bladder damage with the DMSO if it's too high of a dose.
                          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


                          • #14
                            Hi Christine,
                            I just looked at a bottle of the DMSO I had left over from when I did the treatments. It was 50% that I used also. When I did the instills we used 5 meds total (Rimso-50, SoluCortef, Heparin, Marcaine, Sodium Bicarbonate).

                            I wonder if adding those things lessens the risk? Also, how long did your doctor have you hold the solution? My doctor said 20 minutes only, said you get the benefits that way without as many side effects as you get if you hold it longer.

                            Anyway, a few more things to talk with your doctor about...
                            Kadi

                            -------------------------------------------------------------
                            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.
                            ------------------------------------------------------


                            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                            Source - Pinterest
                            "


                            Current treatments:
                            -IC diet
                            -Elavil 50mg at night
                            -Continuous use birth control pills (4-5 periods/year)
                            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                            -Pyridium if needed,
                            -Pain medicine at bedtime daily, as needed during the day several times per week
                            -Antibiotic when doing an instillation to prevent UTI
                            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                            -Dye Free Benadryl 50 mg at bedtime
                            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                            -Managing stress= VERY important!
                            -Fur therapy: Hugging the cat!

                            Comment


                            • #15
                              They told me to hold it for 15 minutes. I think I made it to 14 minutes but it was really hard to hold it that long. As soon as I got up and got dressed I wanted to go pee but I made it for 14 minutes.
                              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

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