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  • Questions about stopping Elmiron

    I am getting ready to start Elmiron for the first time. My concern is regarding the pain/flairs people seem to have when they stop the medicine. Those who have been on Elmiron and have stopped taking it for whatever reason , I would like to hear about your experience with this. Did it hurt, how long did it hurt, did you feel that your IC was worse after you stopped it, did you stop the Elmiron cold turkey, or gradually. Anything you can think of, I would like to hear about it.

    I keep putting off taking my Elmiron for this one reason, I fear my IC will be worse if I have to stop taking the Elmiron for any reason once I start it. So any input would be helpful to me.

    Thanks
    Sharon
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."
    Mary Anne Radmacher

  • #2
    Hi Sharon

    I was given Elmiron when I was first diagnosed with IC in December 98. I took it for 18 months but suffered from stomach problems whilst taking it. It did help my IC, to the point I thought I was cured. However, the stomach problems got so bad I had to stop taking it. I just stopped altogether. It had taken about 3 to 4 months before I noticed a difference with my IC but within a month of stopping, my IC got bad again. I wouldn't say, worse than before I was diagnosed though.

    Over the years I have taken Elmrion off and on, even taking it out of the capsule to see if that helped but I am one of the unlucky ones in that it affects my stomach big time. It does help my IC but I have diahorrea up to 10 times a day and I am not sure which is worse!!!

    I would give it a try, you might be one of the lucky ones it helps

    Anne

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    • #3
      I stopped taking elmiron under advise from my uro. I wasn't having much improvement. I can't remember off the top of my head exactly how long I took it, but it was at least 6 months.

      I stopped gradually, lowered the dosage over a couple of weeks. I did not have a flare up after stopping. But my symptoms were really bad at that time anyway.

      I hope the elmiron works for you! There are people on this board who have had good results and have stayed on it a long time, without a lot of problems.

      Good luck,
      Nicole blink

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      • #4
        I have been on it since July of 2003. I have had great results with it. It is interesting because I thought Elmiron was something that we were going to have to take for the rest of our lives but I have found people on this board talk about coming off of it after a long while. These are people that have had good results and have had no problems with it. I would be afraid to come off of it. I feel so great on it.

        Cali
        Cali

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        • #5
          I took Elmiron for 3 years and it really helped. Six months ago I quit taking it cold turkey because of stomach trouble. So far I'm alright, but if I start having problems with my IC again I'll give Elmiron another try for sure.

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          • #6
            Traysmum-

            I'm on Elmiron, had bad diarrhea and Dr. suggested Benefiber (OTC at your drug store). No more diarrhea and very few bouts of IBS

            Hope this helps
            Pray for a cure, strength and courage..He is listening..always. He is faithful always. He answered my cry for help as I am in remission. Praise be to God :butterfly

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            • #7
              i have been on elmiron for 7 months now. i take 2 pills in the morning and 2 pills at night. if i miss my dose by a few hours i am in GREAT pain. although, now i feel like it's not working as well as it was a few months ago.

              xoxox

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              • #8
                I started Elmiron back in May. I was taken off it cold turkey after a few months due to chest pains. Within five days I was in awful pain, like I had before Elmiron. Doc ok'd me going back on it (although after my ekg came back normal and the pain was so bad I put myself back on it, normally I do exactly what docs say but I couldn't handle the pain). And again in July I had a tumor removed, and was told to go off it for a week. This time the pain didnt start until six days and not as severe. I went back on it right after surgery. I have had one bad flare and a cpl not so bad ones since then, but I feel better on it than off.

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                • #9
                  I was on it for some years before it just stopped working for me and the only thing left were the side effects. I just stopped it and since it didn't work any more ( it never was fantastic for me, it was better at the beginning), no problem. I'm not a doctor and everyone is different but for me cutting down on protein and refined sugar really helps. I still deal with ICs ups and downs.........
                  If you keep a green bough in your heart
                  the singing bird will come.
                  http://www.obsidian-sun.com/

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                  • #10
                    Hi there,
                    I'm new to this Network. Like so many others I do a lot of reading here. It saved me knowing I was NOT alone in my pain and feeling like I'm going crazy. I have been on Elmiron for 9 months now, I thought it helped then I had a bad flair up last month and can't seem it get it under control again. A lot of ice packs. A trick I learned here.

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                    • #11
                      catwoman!!!!

                      I have found that the longer I am on Elmiron the further and further apart the flares are - AND they are less intense than in the past. I hope this is true for you as you keep taking it.
                      Kim

                      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

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                      • #12
                        Thanks for the welcome. I felt the same way about Elmiron at one point. This last flair has changed my mind, it's been a tough one, it hasn't let up. It's been over a month now. Thanks for the encouragement.

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                        • #13
                          i have a question I dont really understand how to work this board works so am posting here need help with posting also wanted to ask if anyone on elmoron i have been on it 2 mo. just 2 weeks ago my head started to kind of hurt not bad but enough to bother me , also the inside of my top and bottom lip hurts and my teeth anyone else had anything like this with elmeron

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                          • #14
                            :yikes:
                            Originally posted by sadgirl1950
                            i have a question I dont really understand how to work this board works so am posting here need help with posting also wanted to ask if anyone on elmoron i have been on it 2 mo. just 2 weeks ago my head started to kind of hurt not bad but enough to bother me , also the inside of my top and bottom lip hurts and my teeth anyone else had anything like this with elmeron

                            Comment


                            • #15
                              No I haven't had any of those feelings from Elmoron. I just don't think for the cost it helps me that much. Hope you're feeling better soon, when your mouth hurts it's no fun. :yikes: I'm new to the boards too, so I'm trying to figure it out as well.

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