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  • #1

    Side Effects

    I was diagnosed with IC in Sept 2004. My uro put me on Elavil and Ditropan XL. I also started the IC Diet and love it. It's made a big difference in my pain. Recently, I had to go off Elavil because of the side effect of being sleepy ALL DAY. I have a young child, so I needed to be more alert. So, we thought we'd try Elmiron. Within a day or two of starting the Elmiron, I started having really bad frequency, especially at night. And, I began having nose bleeds two or three times a day. And, I was getting diarrhea from just about everything I ate. I stuck it out for a month, but the frequency got so bad, I wasn't sleeping most nights. So, I stopped taking it.

    I am frustrated, though, because I know that Elmiron can help aid the repair of the bladder lining. Elavil was just masking my pain, but I was excited about Elmiron actually helping to heal my bladder a bit. Has anyone else had these kinds of side effects? And, if so, do they go away?

    Any help is greatly appreciated.

    Warm Regards,
    Becky B.
    jbe3
    Tags: None
  • #2
    Hi Becky! I didn't have those kinds of side effects, but I wanted to suggest maybe talking to your doctor about having the Elmiron instilled directly into your bladder, instead of taken orally - that way it's not going through your system. Just a thought you might want to entertain!
    Hugs,
    Tracey
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!



    *IC 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.

    IC Diet Cheat Sheet:
    http://www.ic-network.com/diet/2009icdietlist.pdf


    Dx's:
    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Others:
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

    Comment

    • #3
      HI! You might try Freeze dried Aloe Vera. It does the same thing for your bladder that Elmiron does but it does it naturally. It helps rebuild the muscus lining.
      I've been on Elmiron but didn't have any side effects. Sorry to hear that you did. That's the hardest part about IC.......every one of us has such different problems and reacts to the medication so differently. Good luck to you! 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

      • #4
        When I took Elmiron, I had no side effects whatsoever. However, when I started doing heparin/lidocaine/bicarb instillations at home, I went off Elmiron, since the purpose of the instills and the Elmiron are the same... I didn't want to waste money on redundant treatments Besides, the instills give me more relief anyway.

        You may want to ask about doing those. Some doctors do add Elmiron to the instill mix, as Traceann said... that may work for you as well.

        Hope you find a good treatment option!!
        ****
        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

        • #5
          Some people find that the elmiron capsule is the problem. If they empty the contents of the capsule into water and take it that way, the side effects are much less (discard the empty capsule).

          What was the elavil dosage you tried? It comes in as low a dosage as 5 mg; if you were prescribed the usual 25 or 50 mg and it helped your symptoms, a much lower dosage might work without the side effects.

          We are all so very different that it's impossible to predict how a particular treatment will work.

          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

          • #6
            I've been taking Elmiron for a year now. No nosebleeds or increased frequency though. Side effects for me are diahreah/gas, sometimes blood in stool. I tried stopping the Elmiron once, and noticed an increase in symptoms. I'm sorry it didn't work for you...maybe instills of heparin are worth trying next?

            Comment

            • #7
              Thank you for the suggestions and for the encouragement. I am going to talk to my uro about the instills...

              Roxie-where do you find the freeze dried aloe vera? it sounds really appealing as an alternative to meds. i'm always for that!
              jbe3

              Comment

              • #8
                HI jbe3,
                We buy my freeze dried aloe vera is the New Chapter brand from House of Nutrition (it's a yahoo store). I've been using it for 3 yrs now and love it. It helps replace the bladder mucus lining, similiar to what Elmiron does. 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

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