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  • New to the forums and IC

    Hello!!!

    I was diagnosed with Interstitial Cystitis last month. Starting last December I started having problems going to the bathroom a lot at night. I thought I was drinking too much liquid and so I cut down, but it didn't help. In January I went to the ER 3 times for UTI's. I didn't have a primary care Dr. I just got my insurance and was just out of college. The first time they did the test and they found I had a UTI and gave me some medication I was to take for 3 days to take care of it. I came back the following week after the medication wore off. Then, they put me on it for 10 days. From January to May I've been to the Dr.s with UTI's. They did 4 cultures and they all came back negitive. Then last month they did a cystoscopy and found I had IC. Since then I've been trying to keep with the diet and I've been on Elmeron for the past 3 weeks. I've seen little improvement, but I'm assuming it takes time. I'm also on Trazodone for insomnia, which helps me go to sleep. My symptoms tend to get worse at night. Is this normal? I have some pain, but it's more the frequency that really gets to me.

    I like to sleep on my stomach and that tends to irritate my bladder. Sometimes sleeping on my side bothers my bladder as well? Anyone else have this? How long does Elmeron (Spelling?) take to kick in?

    Thanks and you guys seem to be a friendly bunch!!

  • #2
    Hello and

    I have heard that Elmiron can take anywhere from 6 months to a year to feel the full effects of the medication, but some have reported sooner..

    Ronda
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we 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


    • #3
      I'm glad you found the IC Network. You'll find a lot of helpful information here. To answer your question, elmiron can take six months or longer to become effective. Hopefully diet will help you soon. If you don't feel better soon, please contact your doctor about other treatment options.

      Sending healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #4
        HI Iceblink!
        Welcome! As Donna said this is a great place to be if you have IC!
        It's taken almost about 9 mo. before I started feeling the effects of Elmiron. It's great stuff though so don't give up on it! I also take Freeze Dried Aloe Vera which works like Elmiron but naturally and coats the bladder for pain. You might ask your dr. about Elavil. It really helps calm the bladder when you are having frequency and urgency. It's such a pain having to get up in the night SO many times to use the bathroom......then you are tired all day....it's a vicious cycle!
        Have you tried the over the counter Azo? It helps pretty quickly to calm the bladder down when it's spasming.
        I hope you find some relief soon! Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

        Comment


        • #5
          Wow! Thanks for the fast replies! I am just starting to be strict about my diet. My Dr. also said I should "train" my bladder by peeing every hour one week then an hour and a half the next and then 2 hours the next..etc. Until it's managable. I'll keep on the Elmiron. I haven't tried Azo or Freeze Dried Aloe Vera. I'll look into Azo since I don't need an RX for it. Thanks!

          Comment


          • #6
            The Squeaky wheel..

            Hey Iceblink,
            I too took elmiron and it did little to quell the symtpoms I had. The side effects were even worse than my disease. I lost a lot of hair and was riddled with insomnia. Give it a few weeks and if you don't get any relief go back to the doctor. YOU ARE ONLY SUPPOSED TO HAVE ELMIRON SIX MONTHS AT A TIME they told me. The amitryptoline and urised worked better for me than the elmiron. It is rough going, but just keep at it. You will get a lot of opposition because all of us with IC look fine on the outside and it makes people confused when we are down and out. Set your expectations at a reasonable level and don't be too hard on yourself if all you manage to do is take a shower and brush your teeth. Write in a journal and come back to this site often to vent or just so you know you are never alone. Find one good thing to write about every day and do it. You will be in my prayers.
            Originally posted by Iceblink_Luck View Post
            Hello!!!

            I was diagnosed with Interstitial Cystitis last month. Starting last December I started having problems going to the bathroom a lot at night. I thought I was drinking too much liquid and so I cut down, but it didn't help. In January I went to the ER 3 times for UTI's. I didn't have a primary care Dr. I just got my insurance and was just out of college. The first time they did the test and they found I had a UTI and gave me some medication I was to take for 3 days to take care of it. I came back the following week after the medication wore off. Then, they put me on it for 10 days. From January to May I've been to the Dr.s with UTI's. They did 4 cultures and they all came back negitive. Then last month they did a cystoscopy and found I had IC. Since then I've been trying to keep with the diet and I've been on Elmeron for the past 3 weeks. I've seen little improvement, but I'm assuming it takes time. I'm also on Trazodone for insomnia, which helps me go to sleep. My symptoms tend to get worse at night. Is this normal? I have some pain, but it's more the frequency that really gets to me.

            I like to sleep on my stomach and that tends to irritate my bladder. Sometimes sleeping on my side bothers my bladder as well? Anyone else have this? How long does Elmeron (Spelling?) take to kick in?

            Thanks and you guys seem to be a friendly bunch!!

            Comment


            • #7
              Hi Iceblink. I am sorry to hear that you have IC - but you are not alone. I agree with some of the others. Since Elmiron can take a long time to become effective, you might want to ask your doctor about other treatments that can help in the short term. Elavil helps me with frequency (It is the only treatment that I currently use). And if you read through these posts you will find treatments that others have found helpful. I hope you can find a treatment that makes you feel better. Sending healing energy...Linda
              Sudden onset of UTI like symtoms on Dec 27, 2006.
              Diagnosed with IC on March 12, 2007.
              Current Meds: 50mg Elavil
              "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

              Comment


              • #8
                HI! Actually you take Elmiron the rest of your life of you have IC. You check in with your dr. ever 6 mo......if you are doing ok......sooner if you are having problems. It's a long term medication. If you stop taking it......the symptoms return. I'm pretty much pain free now and thrilled about it. I still adhere to the IC diet very strictly though.
                Freeze Dried Aloe Vera isn't a prescription. You can buy it right here on this site now thru Desert Harvest. Good luck! Roxie

                Double Spinal Cord Stimulator surgery 8/09
                Unsuccessful MiniArc sling surgery 12/07
                Dx'd Hypothyroid
                Dx'd Chronic Axonal Neuropathy & Myopathy
                June 2007
                Dx'd IC May 2006 (after suffering for 25+ yrs!)
                First Cysto 1979
                First Hydro 1981 (Many treatments since then!)
                Collagin"Durasphere" injections for urethra
                Gall bladder surgery Aug. 2004
                Gastric Bypass Dec. 2004
                Dx'd: Barrett's Esphogus July 2004
                Dx'd: Vaginal Atrophy 2005
                Bladder surgery 2000
                Dx'd: IBS 2000
                Hysterectomy (fibroids) 1999
                Laminectomy 1989
                Dx'd: Degerative Disk Disorder 1989

                For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                Comment


                • #9
                  Thanks again guys! I'm not sure how long I should take the Elmiron before I talk to my Dr. I don't have a lot of pain, but the constant urgency. Sometimes I have to go to the bathroom right after I go! I called my Dr. after a week and she said I should do the diet and train my bladder. Anyone train their bladder? I've been doing the diet, but still find little relief...

                  Comment

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