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why are some afraid to start elmiron

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  • why are some afraid to start elmiron

    Does this have some side effects that I am not aware of? I just started taking it, and have read some posts of people scared to start to take it. Anything I should know?

  • #2
    I think the potential side effect of some hair loss is the most frightening --- but only a very tiny percentage of people have this side effect and it disappears when the medication is stopped.

    Donna
    Stay safe


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    • #3
      Hair loss is the one that seems to scare a lot of people - it did me. (I'm still on it 5 years later, btw.) The intestinal stuff scares some and the potential to affect liver enzymes. I haven't had any side effects aside from nausea the first few days on it - it's helped me a lot.
      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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      • #4
        intestinal stuff? Oh well I need to be on this medication, or else I might never get to feeling better. I dont realy think the side effects look that bad, and I havent had any problems so far but I have only been on for a few days

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        • #5
          That's how I felt about it, too. I thought, "Well, if I lose some hair, but feel good - I'll figure out a way to live with it." Turns out I didn't need to worry about it after all - and only about 4% of patients have to worry about hair loss anyway. Very small percentage.

          I hope it helps you as much as it has helped me.
          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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          • #6
            The percentage is what got me. So few people actually respond to Elimiron and it takes so long to start working. I took Elimiron for about a year and after showing no signs of improvement, I gladly came off of it. I had a slight bit of hair loss, some GI-track things, and just the pain of taking it 3 times a day without food was just exsulted to me (Granted, I am only 17 and was 15 when I was taking it). But I think it's worth a shot if you think it'll help. Best wishes to you .


            for too long, I've been struggling, couldn't go on
            but now I've found I'm feeling strong and I'm moving on...

            x x

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            • #7
              Elmiron

              I have been on Elmrion for about 4yrs and that has been the best for me I started taking 600 mg a day and then went to 400mg after about 2yrs. Yes my hair started falling out Yes I had weird bowels but for me personally it really worked.
              Blessings,
              Ruth

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              • #8
                Hi! My doctor is pushing me to try it ASAP, but I must admit that I am scared too...I guess because of potential side effects. I may start it within a week though, how are you doing on it?

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                • #9
                  I agree with what the others say, the hair loss and the fact that it can hurt your liver enzymes. But with your hair loss, its only a slight one (4%) and with the liver enzymes, have your doctor do a blood test once a year to see if its normal. I have been on this medicine for 12 years now, and never had a problem with this.

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                  • #10
                    Mary, wow, you've been on it 12 years...did it cause you any other side effects, such as headaches? Thank you.

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                    • #11
                      At first, I had headaches when the doctor double my dosage but they went away after a few weeks. No problems now.

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                      • #12
                        Its been close to a year now for me, and I've noticed no ill side effects (except the cost-lol!) If it works though, and it has for me, its worth it!

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                        • #13
                          Yeah, if it wasn't for insurance, couldn't afford it, not on top of the other medications that I take!

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                          • #14
                            I have been on it since saturday and I have had no problems, just the fact of weird timing to take it

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                            • #15
                              Elmiron

                              All I can say it saved my life.
                              Blessings,
                              Ruth

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