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I wish I never even had to take elmiron

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  • I wish I never even had to take elmiron

    Hello All,
    I was diagnosed with IC in february through a potassium sensitivity test ever since I have been on elmiron. Well to begin, I never really knew who to believe because I got ic last october after a hot steamy night with my husband and wild sex, then I woke up burning and itching and it has never gone away. I have been on antibiotic after antibiotic thinking it was a bladder infection and maybe it once was, but the discomfort has NEVER went away, until elmiron. Now I have been on it for about 2 1/2 months and this has been my experience. I am on it 3x a day for a year is my prescription and then I have to see the doctor again. Well, like the first 2 weeks my symptoms started going away, I mean my symptoms were only burning when and after I urinated and a discomfort for about 30-1 hour after I urinated, and when I say burn it burned really bad. Anyways, that started subsiding after I was on elmiron for 2 weeks. But now I have been on it for about 9-10 weeks, and sometimes I forget to take all 3 a day, like yesterday I only took 2, and it is like my body knows when I take less than 3. The discomfort comes back and even involves some itchiness, and I know there is NO POSSIBILITY of yeast. I am so confused, do I have to be on 3 the rest of my life. I cant even believe that I have this problem to begin with. What do you guys think? It definetely feels better when I urinate and throughout the day now that I am on elmiron, it is just like yesterday when I took 2, today I was having discomfort not that bad maybe 15% until I took my first pill, its like my body needs that 3rd pill. Weird, and this might seem a little weird, but after I urinate I got into this habit months and months ago to take a tissue and twist it like a cigarette looking thing to clean myself out up there, and I do that EVERYTIME that I urinate I dont know if that has helped also, but its like if I dont, I have this feeling like there is excess liquid. And that feeling is still there even after being on the elmiron, I just always still do the twisting tissue thing now when I got to the bathroom. But you see before last october, I NEVER had to deal with any of this crap. I was a normal human being. Okay enough venting from me, thanks for listening.

  • #2
    yes it sucks

    yes it sucks..but if elmiron is working for you..without all the side effects...i say...stay with it.

    but there are other options available.
    i am on elavil & aloe vera ( )

    yes this disease sucks...but it could be worse.
    Quit ELMIRON due to hair loss
    Cystoprotek ROCKS!

    find me on FACEBOOK -
    search my email [email protected]

    Current Meds:
    AM Cystoprotek & ATARAX 50mg
    PM Elavil 25mg


    • #3

      Are you sticking a twisted toilet paper up your urethra? If you are doing this I would say stop! The urethra is very delicate and tender and twisting a toilet paper up there is removing what lubrication you have, and traumatizing tissue. You do not need to "clean" up there-its a virtual water spout. If you cause irritation by this practice you will burn more because you have created an inflammed, irritated area, to say nothing about the possiblity of introducing bacteria from the toilet paper. Toilet paper is not sterile, and in public restrooms it is plain dirty. I have seen maids take rolls from the floor and reattach them to a roll.
      How do you know there is no possibility of a yeast infection? You can have enough yeast to give you vulvar itching and burning but not enough to cause the yeast discharge? Yeast is a big irritant to vulva and urethral area.
      It is critical to take all 3 Elmiron a day as directed. Sounds like you are having a good reaction to it, dont screw it up by not taking it as directed. I take 6 a day, and it has helped me immensely.
      You are fortunate that it is helping you this soon. IC kind of comes and goes, but it is managable.


      Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
      Diagnosis: IC, PFD (both in remission)


      • #4
        hey thanks
        I will try and stop with the tissue thing. It is just really hard because it seems like that is the only way that it stops being irratated. So why should I do, I would have to always sit in a bathtub with how water. Anyways, yes I am going to keep on taking the elmiron, since it has been helping me alot. Oh and it does not feel like a yeast infection, and I have been to the doctor dozens of times. So thanks for your input I am definetely going to try and stop the tissue thing.


        • #5
          Hello Sweetz0625. Have you tried the pills OTC ones that turn ones urine yellow? When I burn it almost always helps me. You seem to have a very unusal case of IC. I guess each of us are different in many ways. Did you get a second opinion? Elmiron is working for me as well. I am so happy for you that it's helping. I wish you all the best. Ziggy


          • #6
            You're lucky the Elmiron is helping you.
            I wish it had helped me. It actually made my IC much worse, not better...

            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!


            • #7
              Hi - I agree with martiangirl - if the Elmiron is working, stick with it.

              I stopped the Elmiron for a time due to hair loss. Within 3 days I was in a terrible flare that wouldn't quit. I am now back on the Elmiron, and thankful that it helps the IC symptoms - hair loss and all!

              Good luck and take it EASY!

              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.


              • #8
                I had to shift my focus very early on from, "Yuck, I have to take ALL these pills the rest of my life???!!!"


                "I am so LUCKY that all these pills take away my symptoms. For some people - nothing works."

                Diagnosed August 2001

                Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

                Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


                “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


                • #9
                  Kim summed it up exactly! She's very wise.