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Without Elmiron for over 3 weeks now!

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  • #1

    Without Elmiron for over 3 weeks now!

    My script for Elmiron ran out & am having a heck of a time getting it re filled thanks to all the red tape with Medicaid. My doc approved it weeks ago, but for some reason Medicaid isnt agreeing to fill it (prob since it costs so much!!)..I was on the patient assist program & got all my Elmiron for free for years, which was such a blessing.
    Just curious if anyone had to stop Elmiron cold turkey? I have been off it like I said 3 weeks & am def. noticing an icrease in symptoms (was on it for at least 4 years already). THANKS!
    ]
    Karen
    Currently Taking:
    20 mg Celexa
    fentanyl patch 12.5 mcg chgd every 3 days
    morphine IR 15 MG, up to 3x daily
    Xanax 1mg as needed (not taken daily)
    900 MG Oxycarbizine (mood disorder)
    300 MG Welbutrin
    Tizanidine 4 mg up to 20 mg daily as need
    Prevacid 30 mg
    Ambien as needed

    my heating pad is my best friend, use daily on my lower back & pelvic area
    blessed to be able to receive massage & Amma , along with Avazzia therapy 3x weekly

    Been diagnosed for 10 years now, consider myself pretty well versed in this disease & would love to help out with new IC sisters or brothers, feel free to message me.
    Tags: None
  • #2
    Hi floridamom,

    I have not had to stop Elmiron (knock on wood), but I just wanted to post and say I hope you get things sorted out with Medicaid and that script filled soon. I shudder to think what I would do without my Elmiron!

    Hugs.

    Comment

    • #3
      beleive it or not today in the mail I got the approval letter for another year of prescription assist!!! my hubby brought home my Elmiron tonite!!! GOD IS GOOD!
      Karen
      Currently Taking:
      20 mg Celexa
      fentanyl patch 12.5 mcg chgd every 3 days
      morphine IR 15 MG, up to 3x daily
      Xanax 1mg as needed (not taken daily)
      900 MG Oxycarbizine (mood disorder)
      300 MG Welbutrin
      Tizanidine 4 mg up to 20 mg daily as need
      Prevacid 30 mg
      Ambien as needed

      my heating pad is my best friend, use daily on my lower back & pelvic area
      blessed to be able to receive massage & Amma , along with Avazzia therapy 3x weekly

      Been diagnosed for 10 years now, consider myself pretty well versed in this disease & would love to help out with new IC sisters or brothers, feel free to message me.

      Comment

      • #4
        Great news!!!

        Comment

        • #5
          Re: Without Elmiron for over 3 weeks now!

          Yes I had to quit my elmiron for the stomach issues it caused and because of the high cost of the med. I went without for 3 months and it was the worst 3 months of my life. I am still trying to get it back under control over 3 months later. I am a letter carrier and the pain of walking and urgency is almost more than I can stand most days.

          Comment

          • #6
            Re: Without Elmiron for over 3 weeks now!

            Floridamom I'm so glad you got this straightened out. And jrm, I hope you get some relief soon.

            Warm hugs,
            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

            • #7
              Re: Without Elmiron for over 3 weeks now!

              Originally posted by [email protected] View Post
              Yes I had to quit my elmiron for the stomach issues it caused and because of the high cost of the med. I went without for 3 months and it was the worst 3 months of my life. I am still trying to get it back under control over 3 months later. I am a letter carrier and the pain of walking and urgency is almost more than I can stand most days.
              to the IC Network family.

              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

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