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newly diagnosed, dmso or elmiron?

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  • newly diagnosed, dmso or elmiron?

    i was recently diagnosed with ic. my symptoms mainly are frequency and urgency. My urologist wanted to either stat dmso or elmiron on me, and i am confused as to what treatment to try first. very nervous about dmso, as ive read up on side effects and possibility of perm bladder damage??? My previous urologist wanted to start heperan installations. My head is spinning and i feel very unsure about all of this. i know it is up to me to decide but im having a difficult time knowing which route to take. Anyone have any thoughts?

  • #2
    I know how confusing all of this is...especially since everyone seems to respond to different treatments. I've had IC for four years and it was quite managable with allegra and xanax.

    But, lately I've been in a worse flare and I'm revisiting the treatment options again. I'm feeling much the same way that you head is spinning. I've started elmiron and am going to try instillations, although I've talked my doctor into using the rescue instill vs. dsmo. It seems to be the more current treatment choice, although many have had good luck with dsmo over the years.


    • #3
      It's so hard to say which one you should try. I've been on Elmiron since Nov and though I don't really think it has helped I haven't had any side effects from it. There are others here though that have many side effects and can't take it. I have also read info about DMSO being painful for some but being very benefical for others.

      Personally I would want to try the Elmiron first because the side effects seem to be less severe if someone has side effects. BUT Elmiron is also really really expensive, even with insurance, my copay for it is $120 for a three month supply and because it's a maintance rx I have to get it through mail order and get a 90 day supply. It kills me to order it and pay all that money.

      Just go w/ what your gut tells you, if you try one and it doesn't work you can always try the other.

      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


      • #4
        I am sure of one thing. All treatment for IC have somethat find it successful and some thatl find it unsceessful. Most here have tried a number of treatments and can give advice as to pros and cons of each treament. I can only tell you about rescue instillations. This is the only treatment that I have had and it was and is successful for me. Natrually I am very supportive of home rescue instillations because they solved all of my problems.
        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
        My Helpful Hints for Home Instillation:

        Institute of Female Pelvic Medicine (J. Dell, My MD)
        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


        • #5
          One thing to think about is that Elmiron can take up to six months or longer to become effective so you might want to think of other treatments in the meantime.

          Stay safe

          Elmiron Eye Disease Information Center -
          Elmiron Eye Disease Fact Sheet (Downloadable) -

          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:


          Diet list:

          AUA Guidelines:

          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.

          Anyone who says something is foolproof hasn't met a determined fool


          • #6
            Donna is absolutley correct - Elmiron may take months, until you see improvement in your symptoms. In the meantime, I would ask about rescue instillations (I am a fan of the DMSO, but I understand your concerns...), antihistamines (Atarax), antidepressants, TENS units, etc....there are many options you have while you are waiting for the Elmiron to kick in....visit the IC Shop and take a look at some literature (Dr. Moldwin's book is a MUST).....

            Keep visiting the boards - they are a lifesaver for me!! You will learn a lot!!

            Good luck and feel good,
            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.


            • #7
              Your going to have to go with your gut on this. As everyone has said, some things work for some people and not others. It's such a personal thing. I would definitely start though with the diet, that seems to be the one thing that most people say does help them. Good luck with your decision.


              I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!


              • #8
                I also sympathize. I was diagnosed in March and my head is still spinning. My symptoms are urethral discomfort, frequency and urgency. I saw an IC specialist in Philadelphia and he perscribed Elavil for me. He did not even mention DSMO or Elmiron. I did ask him about Elmiron (since I had read about it) and he said he did not recommend it for me because it only works for 38 (or so) percent of the people and it takes months before it works. It is so hard to get my arms around this IC stuff - not only do different things work for different people but the doctors all have different approaches to treating IC patients. The Elavil seems to be helping me (although I have gained a few pounds). However, if I do not continue to get better, I will look into some of the other options. I am hoping that you find something that works for you...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


                • #9
                  DSMO Installations

                  I was recently diagnosed ,though I have had problems for years.
                  anyway, I just had my first tx with DSMO, It was very painful afterwards,
                  I could not hold it in at all, and when I went to the restroom, I thought I would die. Now this did not last all day, but it did last for at least 10 hours.
                  My question ,is this normal !!!!!!!


                  • #10
                    I have had 16 DMSO instills and I am still in pain, yet the uro wants to continue. I go in next month again and this time I need to ask what my other options are because I am not feeling better. I seem to have more frequent urethral pain than before DMSO. I had heparin with sodium bicarb monthly instills, but maybe that should be considered again but with lidocaine and solucortef and done more frequently. I just don't know anymore.

                    6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                    tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning


                    • #11
                      I had been being treated with the lidocaine,hepirin instillations along with elavil and atarax for the past 2 months, those instillations would help me for only a day or two. That is why my doctor decided to try the dsmo.
                      Is it true that you will have garlic odor for 72 hours after treatmen
                      I also find that I am turning into a recluse. I must know where every bathroom stop is in town before I even get to town, its awful. I got up at the movies so much to go to the bathroom I decided to leave. Its the pits.