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Elmiron & long term effects

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  • Elmiron & long term effects

    I was diagnosed Summer 2004 with IC after 2 flare ups, one which sent me to the ER. I have been on Elmiron & Elavil with good results for 3 months. I have been feeling better with time and haven't had a major flare up since (just one minor one). I was wondering if those of you who have been on Elmiron for awhile have had found any long-term side effects of the medication. Also, has anyone tried to going off the medication and what were the results?

    Thanks!

  • #2
    I have just been on it for 3 years, but haven't had any long term side effects from it as of yet. I have my liver enzymes checked once a year and so far, so good.

    , btw!
    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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    • #3
      I have been taking Elmiron since 1997 and don't notice any long term effects. As time has gone by, I haev lowered my doseage to one capsule per day, unless I am in a flare, then I increase that, my Uro knows that I take the lower doseage. For me, Elmiron has increased the quality of my life considerably. I have never been brave enough to discontinue it since I am getting good results. Hope this info helps you, Mare

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      • #4
        Mare,

        I'm glad to see that you only take 1 Elmiron a day. On one of the post from who knows what thread, someone wrote that one Elmiron really has no benefits. I am supposed to take 1 Elmiron twice a day. Right now, I can only manage to take 1 Elmiron at night because initially I was feeling so nauseated. I tried adding the morning dose last Thursday, I felt a tightness in my throat. So I didn't take anymore morning dose. Yesterday, I tried the morning dose again, no nausea, just the same tightness in the throat. I was wondering if anyone else has ever felt this. Maybe it is anxiety.

        Does your doctor say there are benefits from the one dose?

        Thank you so much for reading,
        bunnykinb
        bunnykinb

        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

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        • #5
          I just wanted to say that I took 3 capsules of Elmiron a day for a long time. I just couldn't afford that so I gradually reduced to 1 a day to see how I would react. Please realize that I have been taking it since 1997, so maybe now that the drug has been working inside my bladder so long, one a day keeps the synthetic lining stabilized. I really don't know what to think. Along the way, I still get flares and usually increase the doesage for a while. As far as my uro is concerned, he says that he doesn't want me to change anything about my meds unless the IC symptoms change for the worse. I also want to emphasize that I get a lot of relief by following a low acid diet. I am one of the fortunate persons who has really seen an improvement in the quality of my life by using elmiron. For me the relief outways my concerns about the side effects. Good luck in finding some relief soon! Mare

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          • #6
            Out of all the people who have IC, I wonder what the age of onset my most people. Ever since I was little, I have always had to use the bathroom more than the average person. About two years ago, I asked my primary care doctor for Detrol LA then, Ditropan. Both caused excessive dry mouth which made me feel like I was choking even though I only took one pill a day. I had to stop. Then, December 2003, the pain began which I thought I was always having UTI's, but the cultures always came back negative. I was diagnosed with mild IC (although it doesn't feel like it at times) June 2004. I turned 39 in June 2004. Could I have had IC since I was little or was I destined to get in as I became older?

            My son mentioned there is a boy in 5th grade who generally uses the restroom 5-8 times in a one to one and a half hour class. He mentioned he had IC. I pity this young soul and pray that he doesn't endure the pain as many have here.

            Sorry for such a long story, but this website is the only place where people truly understand what I am going through.

            bunnykinb
            bunnykinb

            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

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