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  • Side Effects?

    Hello,

    I just took my first dose of Elmiron this morning. It's been a couple hours. I realize this will most likely do nothing for quite some time (months) if it works, but I am kind of happy I am not experiencing any GI problems so far. Also no dizzyness, nausea, etc.

    I am hopeful that this would have occured after the initial dose and not after a few. Am I wrong here? Did it take some time before side effects were realized (excluding hair loss). I am already balding and don't really care about that.

    One of my biggest fears is that it could be beneficial, but I wouldn't be able to tolerate it since I am sensitive to many meds.

    Please let me know some of your side effect experiences and how long after you started taking it before you noticed them. And if they subsided after a while of taking it.

    Thank you.

  • #2
    I had gastro side effects from day one. I tried all the suggested ways of taking it.

    I took it for 3 mons, side effects never got any better, so I had to give up on it.

    Side effects were worse than IC, and made IC symptoms worse.

    I wish you the best of luck with it, I really wanted it to work for me.

    MG
    My are with you all. May you all find a way to peace and joy in your lives.

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    • #3
      That's helpful

      Thanks! Now I just hope it works after a while. And I never lose my insurance before it becomes an afforadable generic. At around $500/month out of pocket, there isn't much of a chance of me taking it. I hope it goes generic and multi source when it does or the generic will only be about 20% less for a while.

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      • #4
        My daughter has upped her elmiron dosage from 2 a day to 3 a day and is getting extreme stomach pain (burning, acid) in stomach. It comes and goes. Is this a side effect of elmiron?

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        • #5
          Hello I've been on elmiron going on 8 months and I can't stand it. I have bad gastro side effects and feel sick. I can't say that it's helping IC symptoms either but I have been stressed a lot too so that's not helping. I plan on asking my uro for other options at my next appointment.
          Having said all that there are a lot of success stories so hang in there and keep a positive attitude it just may be your answer.
          Good Luck - keep us posted!

          Comment


          • #6
            Thanks Cindy-Lou. 3 doses in (2 capsules twice a day) and no noticeable side effects. No benefits yet of course, but obviously it will take time to see any if there are any.

            For a $20 copay a month, I'm giving it a try for a while I guess. If it works, it's definitely gonna make my job and insurance a lot more valuable in the long run. Unless it goes generic one day and becomes a lot more affordable.

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            • #7
              I have been taking Elmiron since 1997 when it first came out. Obviously it has help me. I do have a little bit of gastro problems but nothing major. At first I started taking 300 mgs daily, now at 600mg.

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              • #8
                I take 200 mg daily and have had no side effects either...
                IC diagnosis 3 weeks ago.
                Vesicare 10 mg once daily
                IBS and Gerd-Zegerid
                IC diet
                Elmiron 100 mg three daily
                Hydroxyzine 25 mg at night
                Amitriptyline 10mg at night
                Diovan 60/12.5 daily
                Topral 50 mg daily
                Zoloft 100 mg at night
                Klonopin .5 twice daily

                Comment


                • #9
                  I have been on Elmiron for a few years and have had no side effects at all.

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                  • #10
                    For me side effects are minimal and the benefit is great.

                    Comment


                    • #11
                      Originally posted by So Frustrated View Post
                      Hello,

                      I just took my first dose of Elmiron this morning. It's been a couple hours. I realize this will most likely do nothing for quite some time (months) if it works, but I am kind of happy I am not experiencing any GI problems so far. Also no dizzyness, nausea, etc.

                      I am hopeful that this would have occured after the initial dose and not after a few. Am I wrong here? Did it take some time before side effects were realized (excluding hair loss). I am already balding and don't really care about that.

                      One of my biggest fears is that it could be beneficial, but I wouldn't be able to tolerate it since I am sensitive to many meds.

                      Please let me know some of your side effect experiences and how long after you started taking it before you noticed them. And if they subsided after a while of taking it.

                      Thank you.
                      We're in the same boat! I picked up my Elmiron prescription yesterday. I'm legitimately nervous to start it..when I think of every medicine I've ever been on, this is definitely in a category all on it's own. I'm a bit scared of the side effects.

                      I also worry that while it might help, I won't tolerate it well. I tried so many anti-depressants that would cause terrible dizziness a month or so after starting them, until I finally switched to Wellbutrin. I hope I will at least have time to see the positive effects of Elmiron before any problems with tolerating it emerge, should I have any problems. I'd hate for the one and only prescription medicine for IC not sit well with me. let me know how the next few days go! I think I will start taking it tomorrow..

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                      • #12
                        I have been on elmiron since april 2004. I have a sensitive stomach but have had absolutely NO side effects w/elmiron. It has been my saving grace for IC.

                        Comment


                        • #13
                          I have been on Elmiron for about two weeks and all of a sudden my Asthma has gotten worst.Has anyone with Asthma notice a change.I have been good for the past year,now my chest is tight and coughing!

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