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  • Stopped Elmiron

    After my first dx of IC, back in 1999-2000, I have been a supporter of elmiron. My IC is mild, thank goodness. But there have been many times in the last 10 years that I wondered if it even worked.
    It did.........

    But now I've tried going without it and so far so good! It has been almost 3 weeks. Now usually when I've tried this, under my uro's care, I could'nt make it past day 4 w/o going into a huge flare.

    I don't know why it's working now........I guess my IC is 'stable' at the moment. I know my checkbook approves....

    Anymore positive Elmiron stories?
    Tons of support,
    Jaime

    IC angel helping families in need for the holidays. [email protected]

  • #2
    What has led you to stop? Just curious.
    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

    Comment


    • #3
      I am glad you are having success without the elmiron. I am curious, too, to know why you decided to stop since you've stopped before and had flares.. It is definitely interesting that you didn't have the same reaction this time. Did you change or add any other meds?

      ~Claudia

      "A heart is not judged by how much you love; but by how much you are loved by others."
      ~ The Wizard of Oz

      "If I ever go looking for my heart's desire again, I won't look any further than my own
      back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


      Comment


      • #4
        I'm glad you are doing well. Whenever I hear stories like this, though, I have to wonder how much of a role Elmiron played in helping you, and how much of it was just your own body going into remission. We know that Elmiron does not heal the bladder permanently, but only provides a temporary coating.

        Well, if you don't need the Elmiron, it's a good thing not to take it - like you said, easier on the pocketbook, and probably in general it's best not to take meds when you don't need them.

        I'm glad you are in remission!

        Blessings,
        Lori

        Comment


        • #5
          I quit Elmiron as well, but replaced it with rescue instillations of heparin/bicarb/lidocaine. My uro approves of this and of course, my checkbook also, since we decided there was really no sense in using two coating strategies.

          I think that since Elmiron does help some, even though the number is smaller than the IC community would like, it can be useful since it DOES help that group. It also gives some hope to BOTH patients and doctors; for patients, they can hope that it works, and for doctors, it gives an incentive to produce a drug that works better and faster than Elmiron. Usually, in medical research, if NO drug is present, research stalls... however, if just one drug is present, it (a) draws attention to an area that needs more research and (b) presents a challenge and more research is devoted to improving therapy.

          Perhaps you are in a remission now, which would be fabulous
          ****
          Jen

          *Diagnosed with severe IC in 2004
          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

          **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Comment


          • #6
            glad you are okay without Elmiron. It is expensive. I had to stop in January but felt really bad after about 10 days. Prior to that, didn't think it helped although I hadn't had extreme frequency whilst on it. Now gone onto Elavil and hoping I can just use that as have to pay for Elmiron if I want to go back on it.
            IC diagnosis: Aug 2005
            Symptoms: Urgency, urge and irritation and urethral symptoms
            Flareup for 1 year til July 2007 (had constant urge and pain et al....)

            Elmiron 100mg 3x daily April 2006 - present
            Enablex 7.5mg nightly Sep 2007 -present
            Atarax, Elavil 10mg nightly (Dec 2007)
            Acupuncture - November 2007 - present

            (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)

            Comment


            • #7
              Good luck!!

              Comment


              • #8
                Hi everyone!
                I just thought I'd 'try' to go without it again.
                I also started taking aloe vera gel capsules two times a day.
                I don't know if the aloe is soothing my bladder enough or it is a true remission. I've felt great many times before. But I've always had my elmiron.

                My worse fear would be having a flare or a lot of the frequency starting up and having to start all over again. The elmiron actually took six months to ever show real relief.

                My IC has always been a mild case. I guess this plays a huge part in feeling good with and without the meds, so far.

                I hope everyone is doing good and I'll still be around trying to support others. Feeling good isn't sending me packin'.
                Tons of support,
                Jaime

                IC angel helping families in need for the holidays. [email protected]

                Comment


                • #9
                  Jaime,
                  I do hope that your success continues without the elmiron!!!

                  ~Claudia

                  "A heart is not judged by how much you love; but by how much you are loved by others."
                  ~ The Wizard of Oz

                  "If I ever go looking for my heart's desire again, I won't look any further than my own
                  back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


                  Comment


                  • #10
                    I just went off Elmiron about 2 weeks ago after being on it for one year. Last February, a biopsy showed my bladder was inflammed. 6 months later, I went to another doctor and my bladder was perfectly healthy. The doctor did not know if it was the Elmiron or if my bladder was never really inflammed in the first place! (her theory was the actual biopsy procedure inflammed my bladder). So now I was told to go off the Elmiron and I'm feeling worse! I was also put on Elavil which is giving me horrible side effects. I don't know what to do. I tried calling my doctor and she has not returned my phone call.

                    Best of luck to you jamie15!

                    Comment


                    • #11
                      Batty,
                      I'm so sorry you are feeling worse! At least you put a call in to get feedback from your medical team. I can't imagine elmiron helping your bladder that much in two weeks time. It is one of those slow acting medications that take several months to feel the good effect, if it works.
                      You could always go get another opinion. I do hope you get an answer soon....surely they won't leave you stranded since it is close to the weekend. I'll be sending good thoughts your way...

                      Topcop,
                      Thanks so much!

                      Sweetangel,
                      I didn't mention that from time to time I used to take elavil too. But I could'nt get out of bed the next morning......sheesh....that stuff knocked me out...but I only had to get up once at night to tinkle....instead of three times...


                      Kim, Jen, Lori, and Les,
                      Good to see you guys!! I get on here and rarely see the 'oldies'.....I hope everyone is well!
                      Tons of support,
                      Jaime

                      IC angel helping families in need for the holidays. [email protected]

                      Comment


                      • #12
                        Thanks, jamie15. I think you misunderstood my post. I have been on Elmiron since February of 2006, after a biopsy showed my bladder was inflammed. In August of 2006 I went to a new doctor who said I had a perfectly healthy bladder (and judging by the pics it was true!) She told me to go off the Elmiron at my last visit which was last month. It's been two weeks since I went off of it and now I feel worse.

                        I'm probably going to get another opinion anyway. I have been to 5 doctors so far and I'm not any better. My symptoms started in November of 2005.

                        Comment


                        • #13
                          Don't give up, Batty. I had my round of doctors too. I went for almost a year of medical doctors and uros before finding one who actually WANTED to know what was wrong with me, instead of trying to send me off with antibiotics.
                          I hope you find a great doctor. One is out there for you!
                          Tons of support,
                          Jaime

                          IC angel helping families in need for the holidays. [email protected]

                          Comment


                          • #14
                            It's good to see you, too, Jaime! I hope you continue to feel great!
                            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

                            Comment

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