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Just wondering if Elmiron helps "most" people

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  • Just wondering if Elmiron helps "most" people

    I have been on Elmiron for not quite 3 months now and not feeling any improvement "yet" but I know it can take awhile......just hoping that it "will" help, especially with the pain.

    Does it seem to help "most" people?

    Thank you. toilet

  • #2
    Hi Trace,
    Yes, it can take awhile for the Elmiron to work. I believe the number is around 40% that it helps. For the ones it does help, it is worth that wait. Many times it is used in combination with other medications.

    You can read about some of them in the Guest lecture series under Elmiron.

    Good luck and I hope you are one of the lucky ones.

    "Life is what happens when you are making other plans" John Lennon

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    Information for Patients can be found here.

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    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

    "IC 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."


    • #3
      I have found that the improvement on Elmiron is gradual. It's not like you're going to wake up one day and feel better. The improvement slowly increases for me. When I feel like it's not helping, I try to remember how I felt three or four months ago and how much pain I was in. If you keep a pain or frequency diary and look back over the weeks or months, it's easier to see if there was any improvement. Don't lose hope, it sometimes takes 6 months to a year to see improvement.


      • #4
        Thanks so much for your reply's.
        I "was" on Paxil for 4 years and I guess that helped my bladder more than I realized because in the 3 months since being off of Paxil I have been in a severe flare that doesn't "calm down". The side effects on the Paxil such as the fatique, alot of weight gain and the restlessness were really getting to me and I could no longer handle. I don't know what made me feel IC or the large weight gain. I am going to try Atarax and see if that can get my bladder to relax.
        I hope...... wink


        • #5
          I want knock on Elimron because it did help me some but not enough i took it for two years now i take the dmso treatments at home one to three times a day and that has helped me more then the elimron pill alone. I hear alot of sucess story on elimron and my uro has also told me after looking after my bladder after taking elimron my bladder did look better but my pain didn't slow down at all. that was the sad part on my end. but as my personal exp. goes I will stick to my dmso. grouphug
          Medicine taken daily or as needed:
          1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
          2. MS.Cotin 100mg 3x daily
          3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
          4. Fentanyl 100 mg Change every 48hrs.
          5. Gentamicin 80mg install after each rescue treatment
          5 Leviquin 500mg self start as needed.
          6. Klonopin 1 or 2 daily as needed.
          7. Prosed/DS as 1 every 6hrs as needed.

          I have IC, but IC doesn't have me anymore!


          • #6
            I was on it I'm allgeric to it......
            Angela aka sleepyangel30


            • #7
     helped me tremendously. I was on it for a total of 3 years, and eventually weaned myself off. Now I manage my IC symptoms entirely with diet. But it did take a few months to "kick in"...hang in there!

              My story of healing and hope


              • #8
                I have been on Elmiron for a year now, and still not sure if it is helping. I have had to have bladder instillations twice a month for the last year to help with the pressure and urgency, but how do I know if it would be worse without the Elmiron? I recently have developed stomach problems and have read on other message boards of other people who suddenly did the same after being on it for a long time. Anyone else experience this? Thanks all.


                • #9
                  Has anyone experienced water retention and/or weight gain while taking Elmiron? Ive only been taking it for a couple of weeks and ive gained 5 lbs and feel like a blown up balloon! Nothing else in my life has changed, my diet and exercise are the same so I was wondering if its the Elmiron?? Thanks!


                  • #10
                    I live in Henderson too!

                    Peggy Anne,
                    Hi, I live in Henderson too! I live in McDonald Ranch...Wow..small world!

                    (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

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                    • #11

                      Peggy Anne
                      I have gained alot of weight also with tummy very swollen (bloated) But I have been on elmiron for 3 years now. I stopped it once and my IC flared up big time. I was taking 6 pills a day.
                      My hair is getting very thin also. I would like to stop. Now I take 4 pills day. Symptons are all the same. My ur believes in elmiron, and he does not want me off.
                      It takes a little darkness for us to see the stars, and a whole lifetime to reach them.
                      Don't give up. I cannot take away your pain, but I can listen.
                      email me at [email protected]


                      • #12
                        Hi there,
                        I've been on Elmiron for, I think, about 4 years now and it has been my godsend. I'd say about 95-99% of the time, I have no symptoms at all. As someone else said, it was a gradual thing. I definitely found the longer I was on it, the better and better I felt. I know it's hard to wait, but if it works for you, it will change your life. And a research study a while back showed evidence that the longer people stay on Elmiron, the better results they got. The project was originally meant to see if larger doses of Elmiron worked more effectively. That doesn't seem to be the case, but they did find that the length of time was the key.

                        Good luck to you!!!
                        Melanie J.
                        "The sun shines not on us, but in us." John Muir

                        Living a happy life in spite of IC!


                        • #13
                          Elmiron has been my godsend, too. Very gradual help, but it has just gotten better and better over the last 2 and a half years. I have had no long term bad side effects whatsoever. Some nausea the first few days, but after that nothing.

                          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


                          • #14
                            So good to see that Elmiron is helping some of you. I had been on it previously for about a year, then was off for almost four years. Now my IC has flared back up and I am back on Elmiron for almost five months now and I plan on never stopping it again. I hope to get good results with it again. One year ago I was drinking OJ every morning and adding extra tomatoes to everything without any problems. I miss that and hope to one day feel better again. Good luck to you all.


                            • #15
                              Elmiron has helped me a lot. It did take a while before I noticed significant improvement - maybe 3-4 months. I'm also using it in conjunction with other meds and I think they have all contributed to my overall improvement. Most days I feel perfectly fine. I've been on Elmiron about a year now. I was taking 400 mg per day but have cut it down to 200 mg without any change in my condition.

                              "You must be the change you want to see in the world." - Mahatma Gandhi

                              "The most important medicine is tender love and care" - Mother Teresa

                              Proud mother of Ahleia, born on April 9, 2007

                              Diagnosed with:
                              IC, OAB, Congenital urethral stricture, IBS, Vulvar vestibulitis, Heart murmur, Congenital cervical stenosis...but otherwise doing great!

                              Currently in remission, but took the following for 3 years: Elmiron 200 mg., Elavil 25 mg., Detrol LA 4mg, Ovcon-35

                              Health treatments/practices:
                              Kripalu yoga, Chiropractic, Massage therapy and Reiki