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hello just dx. with ic 3-1-11

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  • hello just dx. with ic 3-1-11

    Hello everyone, Just wanted to introduce myself my name is Sara 35 years old and have been dx. with ic just this month. My symptoms started in November of last year and progressed since then. I mostly have frequent urination and pelvic and lower back pain. (is that common)? I am taking Toviaz for frequent urination and seems to be working so far, just makes me very tired. I was diagnosed by cysto/hydro and have a mild case so they say. I am just very frustrated and depressed over the diagnosis of this condition. I can't even afford the Elmiron because blue cross blue shield dosn't cover the drug. I would have to pay out of pocket which would be 374.00 a month! Who can affford that? Any suggestions for frequent urinaiton and pelvic pain. I also take an antianxiey pill before bed and that really helps me sleep.
    thanks

  • #2
    Hello Sara, sorry to see you here, but it is not the end of the world. There are a hundred options out there. You were very fortunate to have gotten your DX so quickly, some go years thinking they're going nuts, no one will believe how they feel. Your doc is probably starting conservatively. Elmiron has a web site where they will help you with cost. Can't believe BC/BS won't cover this, would argue that. Do they want you running to the ER all the time? Sometimes the ins cos make no sense at all. Would definitely appeal that, sure your doc would vouch for it. There are a lot of other relatively harmless meds you can try that are generic, pyridium, hydroxyzine, etc etc. Read up on them and speak with your doc about them, sounds like he is on top of things.

    And start/stick with the diet. It takes a little while to kick in, after all you have to get rid of all the junk in your system, but it really helps. Wish you success on your trip to relief, and never give up, and never get discourage by some of the bad things you read. Focus on the positive and look forward. Take care, and please let everyone know how you are doing. We all care, and maybe you will be THE ONE who stumbles on the miracle. Jill, wife of Bob

    Comment


    • #3
      thanks Jill, i will try to stay positive and look forward. I think i will take that matter up with bc/bs crazy

      Comment


      • #4
        to the IC Network. I'm very glad you found us.

        One thing you can do is to put yourself on an IC diet. Most of us find that single step helps more than anything else. You'll find the link to the latest food list in my signature below.

        There are many meds other than elmiron that can be helpful. But I do agree that if your doctor will help, an appeal will very likely get you the insurance coverage.

        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

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        • #5
          I have BC/BS of TX, and my co-pay for Elmiron is $15 a month... so PARTS of BC/BS cover it anyway... definitely appeal.
          Symtoms started July 2010.
          Severe pelvic floor pain only.

          2 time PT graduate!
          In medical remission since August 2011; able to eat and drink anything I want currently.

          IC meds:
          200 mg Elmiron in the morning
          100 mg Elmiron @ night
          Macrobid after intercourse

          03/11 07/11 01/12
          If at first you don't succeed: 07/26/2013!

          Comment


          • #6
            I was going to add that not all BCBS insurance doesn't pay for Elmiron. I am starting on it next month and have already checked. It is a tier 3 so I will pay $50 a month. Just wanted to put that out there in case other's read this and worry that all BCBS doesn't cover it. I agree with the other's though, I would try and appeal that, I am sure they have other IC patients and with Elmiron being the only FDA approved med seems like they would have to approve you. Maybe no one has taken up the cause, hopefully you can and help other's on that plan with IC in the process.

            ME: I think you must have the lowest co pay for elmiron I have seen, lucky you!!
            Link to the patient information, everything from What is IC? to Disability
            http://www.ic-network.com/patientlinks.html

            American Urological Association Clinical Guideline
            Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
            http://www.auanet.org/content/guidel...ent_ic-bps.pdf

            Comment


            • #7
              I have BCBS of Illinois (hmo) and I paid about 120 for the first month I think. Our prescription plan used to pay for so much more but not anymore.
              Cindi


              Gelnique for frequency/urgency - works great
              Macrobid after sex
              Prilosec, continuous birth control pills
              synthroid .088mg, mucinex-d, restasis

              Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

              Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

              IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
              AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
              AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
              Great treatment flowchart on page 19 of the pdf

              Comment


              • #8
                Technically, if I were to get it through a pharmacy, it would be $45 a month... but if I get it through their mail order pharmacy, PrimeMail, it is $45 for a 3 month supply... $15 a month. I would recommend checking to see if you have this option as well. It's saved me a lot on several pricey prescriptions my stepdaughter and I have!
                Symtoms started July 2010.
                Severe pelvic floor pain only.

                2 time PT graduate!
                In medical remission since August 2011; able to eat and drink anything I want currently.

                IC meds:
                200 mg Elmiron in the morning
                100 mg Elmiron @ night
                Macrobid after intercourse

                03/11 07/11 01/12
                If at first you don't succeed: 07/26/2013!

                Comment


                • #9
                  thank you everyone!!

                  Thanks to everyone who responded to my post. I will definately persue this issue with Elmiron further with bc/bs. I will start the ic diet asap and have also ordered a few others items to get me started.

                  Comment


                  • #10
                    I also wanted to say... you asked about other meds that could help pelvic pain. If I could ONLY be on one med for IC, I would choose amitriptyline (Elavil) hands down. Most of my IC revolves around massive pelvic pain, and within 3 days of starting it, I was noticing improvements. After I'd been on it a month, I was back to feeling normal. (I also did 6 weeks of PT). I recently had to be off of it for about 6 weeks, and it was back to how I was before... I've been back on it 6 days now, and am feeling SO much better.
                    Symtoms started July 2010.
                    Severe pelvic floor pain only.

                    2 time PT graduate!
                    In medical remission since August 2011; able to eat and drink anything I want currently.

                    IC meds:
                    200 mg Elmiron in the morning
                    100 mg Elmiron @ night
                    Macrobid after intercourse

                    03/11 07/11 01/12
                    If at first you don't succeed: 07/26/2013!

                    Comment


                    • #11
                      Blue Cross Blue Shield

                      Hi
                      Welcome to the group.
                      I have the same insurance and I get my Elmiron through the mail order program. Do you have that option?

                      ~~Heidi~~
                      My issues:
                      Adenomyosis -Diagnosed 2010
                      Fibromyalgia - Diagnosed 2009
                      IBS - Diagnosed 2007
                      IC - Diagnosed 2003
                      Endo - Diagnosed 1998
                      Cystic Acne
                      Migraines




                      My meds:
                      Elmiron orally 100 mg 2x per day
                      Effexor 75mg 1x perday
                      Welburtin 150 mg 1x per day
                      Maxalt (as needed for migraines)
                      birth control pills


                      Comment

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