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  • Relief

    Hi everyone. So I'm coming up on my one year anniversary of my diagnosis. And I remember laying in bed every morning praying that whatever I had would just go away. I remember finding this site and reading everything I could and just praying it wasn't what I had. I found out in July that I had IC - thru hydrodistention and laprascopic surgery.

    The good news is I have been in remission for a good two months and I just keep feeling better. Actually started excercising again without any real side effects. I can eat food again without my bladder cringing.

    I've been on 300mg of Elmiron and Detrol since August of last year. So when they say it takes 6 months to work - they are right. I've just kept on taking the pills 3 times a day faithfully. I know this won't work for everyone but if I encourage just one person to do this and it makes a differance - thats good enough for me. And I know I will have relapses again - but for now the future looks good. I think the best part is knowing that even as I get flares - they are not forever.

    I hope any of you out there reading this, thinking your life is over will be encouraged. The site has been a lifesaver to me.

    Happy Valentines Day to everyone!!!

  • #2
    SueQ,

    Thank you for posting about feeling good and hanging in there. Hope your remission last forever

    I have been on Elmiron for almost 3 months. Your post was soooo encouraging to me. It's good to hear success stories. It gives hope!

    Sometimes I wonder if Elmiron is really helping and then realize I haven't given it enough time.

    So glad you posted today

    Hanging in there, Tilly
    Tilly

    Comment


    • #3
      That is soooooo GREAT to hear!!!!!!!! Elmiron has really helped me, too. Thanks so much for sharing the good news.
      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


      • #4
        That is fantastic to hear!!
        Elmiron has helped me as well.
        It really does take time to figure out what works best for each of us.
        Continue your remission and live it up!!
        Hugs!!
        Tons of support,
        Jaime

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

        Comment


        • #5
          Thank you so much for your positive post!!!!!! I've been taking Elmiron for 7 weeks.

          I so much hope the Elmiron will work for me too...
          Kadi

          -------------------------------------------------------------
          I am not a medical authority nor do I offer medical advice. In all cases, 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.
          ------------------------------------------------------


          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
          Source - Pinterest
          "


          Current treatments:
          -IC diet
          -Elavil 50mg at night
          -Continuous use birth control pills (4-5 periods/year)
          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
          -Pyridium if needed,
          -Pain medicine at bedtime daily, as needed during the day several times per week
          -Antibiotic when doing an instillation to prevent UTI
          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
          -Dye Free Benadryl 50 mg at bedtime
          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
          -Managing stress= VERY important!
          -Fur therapy: Hugging the cat!

          Comment


          • #6
            Always glad to hear when someone gets relief.

            Comment


            • #7
              Thanks so much for posting such an encouraging
              message. Since I am new (diagnosed Jan 7) I
              find it very uplifting. You sound like me,
              praying every day this will GO AWAY. I also
              am taking Elmiron,Detrol LA and the DMSO/Heparin
              instills. My hair is falling out, and symptoms
              are a bit worse, but I am still hopeful.

              I hope you continue doing well, adn thanks again
              for your possitive msg

              Stacy

              Comment


              • #8
                i was just told i have ic as well. i have been on elmiron for 3 1/2 months. how do you take your pills? Do you take it w/ food or w/out. i'm not feeling better but i am very hopeful i just need to give it more time. i hope you coninue to get better. lori hehl

                Comment


                • #9
                  Hi Lori,

                  I started on Elmiron just 2 weeks ago. I was advised to take it without food because that's what the drug trials were based on. They say that if you take it with food that it will bind to the food and may not get to your bladder. While this has been very inconvenient(either 1 hour before meals or 2 hours after) I'm trying to make it work. I usually take 1 pill mid-morning, another mid-afternoon and another before bed. I'd be interested to know if anyone has had any other method of success.

                  October

                  Comment


                  • #10
                    Hi, I take the Elmiron when i wake up in the middle of the night to pee (whenever that is), mid-morning , & late afternoon (1-2 hours before dinner). I figure that stretches the coverage out over 24 hours rather than just my waking hours and since I'm then drinking H20 in the middle of the night - it's reduced the pain I used to wake up with.

                    One good thing, I guess, is it's cut down on my snacking!
                    Kadi

                    -------------------------------------------------------------
                    I am not a medical authority nor do I offer medical advice. In all cases, 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.
                    ------------------------------------------------------


                    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                    Source - Pinterest
                    "


                    Current treatments:
                    -IC diet
                    -Elavil 50mg at night
                    -Continuous use birth control pills (4-5 periods/year)
                    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                    -Pyridium if needed,
                    -Pain medicine at bedtime daily, as needed during the day several times per week
                    -Antibiotic when doing an instillation to prevent UTI
                    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                    -Dye Free Benadryl 50 mg at bedtime
                    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                    -Managing stress= VERY important!
                    -Fur therapy: Hugging the cat!

                    Comment


                    • #11
                      I've had excellent results since early December when I started taking 1000 mg of Quercetin and 1500 mg of Glucosamine/Chondroitin/MSM each day.

                      I quit taking Elmiron about a week after I started taking these supplements and haven't felt the need to take it since then. I believe these supplements work just as well (or better) than the Elmiron did, and they are much cheaper and also help the minor arthritis pains that I used to have in my wrists, feet, neck, and lower back.

                      When I started taking Elmiron in June 2002, I noticed that it was helping after about two weeks (drugs usually affect me quickly). I took it for about 18 months until I found out about the Quercetin and Glucosamine/Chondroitin combination at algonot.com and decided to try it.

                      My best to all!

                      Deb

                      Comment


                      • #12
                        I kinda go with Debeck ...so glad that Elmiron works for those it works for but I was miserable on it. I take the same blend of supplements she does...not as much Querciten because I also take atarax and don't want to much happening as far the anithistimine approach goes. I'm just finally getting my hair to approach normally after the clumps I lost on elmiron..."Shudder"....
                        I am really happy for those whom it works for though. I'm so allergic to stuff, I'm not surprised it didn't work.

                        Tracey :p
                        I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                        Medications I CURRENTLY take:
                        90 mgs Ms contin (45 mgs Am/PM)
                        Percocet as needed
                        Topomax 100mg day
                        Ambien 10 mg bed
                        desipramine 25 mgs




                        If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                        Albert Einstein

                        Comment


                        • #13
                          The first week of March will be one year since my first Hydro and IC diagnosis and since i got on Elmiron. I'm not sure its whats helped me the most but I've had no bad reactions to it so I am definately going to keep taking it. Anything is worth a try. I think the Hydro/bladder retraining has been the best help and just me buckling down and telling my bladder hey i'm in control of you and not the other way around lol

                          Comment


                          • #14
                            I just finished my first of 4 bottles of the Algonot cystoprotek 5 in 1. So far have not felt or seen any differences. I diagnosed myself several months back with IC. My uro & neuro seem to have communication problems regarding setting up a urodynamics test. Suppose to take place months back. Have called both several times but all I get is finger pointing and excuses. I figured it really does not matter if I do have IC there is really nothing they can do anyway so I got a little proactive and started on the cystoprotek. Not really interested in losing my hair or other possible side effects (may or may not occur) of Elmiron. I currently enjoy a beautiful full head of it. I am not going to make any further calls to my uro or neuro until I finish all 4 bottles to see if they do help. I would have to agree with the above posts regarding it alleviating other arthro. pains. I did have a knee that continually bothered me and since I have started on the cysto it has stopped. Prelief had the exact opposite effect on me than most folks. I started on it and I immediately went from getting up every two hours at night to every hour or sooner. I stayed on it and finished 1 whole bottle. The second I came off of it I went right back to getting up every two hours. Not sure what was going on here but since I really do not have any real bladder pain I stopped the Prelief.

                            Comment


                            • #15
                              How great to see all this info. on your experiences w/Elmiron and Cysto-Protek, here - just what I was hoping to find!

                              I've been on ELMIRON for over 7 mos., now and just noticed a big difference around Christmas/New Year's...as others have mentioned, it really DOES take that long to work.

                              Not only that, but just recently I'm <even> tolerating the capsules, too - whereas prior, I had to empty the med into a glass of water. SO much more convenient, when you're out of the house trying to do errands, etc.!

                              Tried it twice prior, in years past but for anyone struggling with side effects, all I can say is it's worth trying to stick with it and go the extra mile.

                              Last time around, I was nautious 24/7 after 8 mos. or so and decided to stop Elmiron indefinately (did DMSO, instead 1-2x/mo. for 2 yrs.); now I'm on a "reduced dose" of 4 (vs. 6) caps, that enables me to tolerate it, AND get this: it's all thanks to a post I read, here in the IC Chatroom! grouphug kissing angel

                              Incidentally, the Algonot Plus and Cysto-Protek also helped my knee pain, tremendously - a wonderful, added bonus.

                              For all of you who are either considering Elmiron, have only been on it a short time or are currently struggling with side effects, I can only say that for me, I wish I had known years ago what I know today...

                              Flares pass so much more quickly, now and I tolerate more types of foods more frequently, than on DMSO, etc. - a real God-send.

                              PS - The only part I don't like, is the apparent hair loss - something I cannot afford, having thin hair, as it is. HAS ANYONE OUT THERE EXPERIENTED WITH ROGAINE FOR WOMEN, MINOXIDIL or other products, and found any success in countering this side effect?

                              * Liked the sugg. of taking Elmiron during middle- of-the-night voids!

                              Comment

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