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  • #1

    Help with Elmiron

    I was just diagnose with IC last Thursday. Please bare with me this is all very new and a bit scary. My doctor prescribed Elmiron but my problem is, is that I my insurance won't pay for it and I can not afford it. I have no one to help me get it and my doctor says that it's the only thing that will repair my bladder. Is there anyone that knows of a way I could get help getting this medicine? Please help me.
    Thanks,
    Jennifer
    Last edited by nola_heart; 05-03-2007, 02:27 AM.
    " Home is ultimately not about the place to live but about the people with whom you are most fully alive. Home is about love, relationship, community, and belonging, and we are all searching for home."

    " Our ability to endure, to persevere, to overcome is fueled by this one seemingly innocuous ingredient called hope."

    I'm reading this book by: Erwin Raphael McManus called Soul Cravings. I saw these passages and decided to share them with you.





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    • #2
      If you have prescription coverage, I would appeal their denial. Your doctor should be able to help with the appeal by writing a letter to them.

      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

        • #3
          Hi Nola,

          Call the company and they may be able to help you pay for the rx.
          There are several different type of med combos that can help you manage IC
          for bladder spasms there is urised, pyridum .. anti-spasm meds.

          I am glad you found us, you will find a wealth of info within these pages and tons of support,
          'The will of God will never take you where the Grace of God will not protect you.'

            Comment

            • #4
              re

              to be quite honest..i wish i never took the elmiron.
              my hair is falling out like crazy
              i quit it a few weeks back..


              secondly, i dont think elmiron actually "heals" the bladder. i dont think anything does that.


              but they are MANY other meds

              diet is very important
              i am on elavil
              i am also on aloe vera pills...check out
              desertharvest.com
              Quit ELMIRON due to hair loss
              Cystoprotek ROCKS!

              find me on FACEBOOK -
              search my email [email protected]

              Current Meds:
              AM Cystoprotek & ATARAX 50mg
              Dinner CYSTOPROTEK
              PM Elavil 25mg

                Comment

                • #5
                  HI I agree with Donna, you need to appeal the insurance's deniling...and don't give up! I had to do that with several meds my insurance wouldn't cover. Don't take no for an answer and they usually will back down and give in. Who ever you talk with first with your insurance company tell them you want to talk to their superior....and keep going up the line. It's not easy but don't give up. 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

                    • #6
                      Hi Nola,

                      I was in your boat when my insurance company denied covering the Elmiron...my uro was great! Ask your doctor to appeal on your behalf - many times they will reconsider if your physician explains the condition and the benefits of Elmiron.

                      Elmiron does not help everybody, but it is worth a shot. My hair began falling out (like the previous post's) and I stopped it for 3 months - BAD MISTAKE - flared for sometime. I would rather take the Elmiron, knowing it is making my condition more bearable and invest in extensions (which I have).

                      By the way, I am a teacher - always up in front of students, faculty - and my appearance IS important to me. But, I'd rather be balding and be on the Elmiron, than worry about the hair loss....

                      Good luck!

                      Hugs,
                      Beth
                      IC diagnosis 1999
                      Meds: Elmiron
                      hydroxyzine hcl
                      DMSO as needed
                      valium as needed
                      librax 3x day

                      TENS therapy



                      Thanks to all on the boards - YOU have helped more than I can say!


                      A person's true wealth is the good he or she does in the world.

                        Comment

                        • #7
                          There are many other treatment options besides Elmiron , so if you end up NOT being able to get it ---- don't panic! There are other things to try. If you look at the ICN's free, online Patient Handbook you can read about some of the other things out there:

                          http//:www.ic-network.com/handbook

                          That said, definitely appeal that insurance decision! Elmiron does not help everyone, but for some of us it makes a big difference! I have had ZERO side effects. I have not experienced hair loss on it and I've been on it for nearly 6 years now.

                          So, see if you can appeal it. If you end up not being able to afford it, rest assured that there ARE other options out there for treating your symptoms.

                          Here is a link to information about prescription assistance programs:

                          Page Not Found -  Interstitial Cystitis Network 
                          http://www.ic-network.com/drugassistance/
                          Last edited by vm; 05-03-2007, 11:07 AM.
                          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

                            • #8
                              Here is a description of what they think Elmiron does:

                              Over the years, ELMIRON® has been extensively discussed, studied and tested but much is still unknown about it. Dr. Lowell Parsons, a leading IC researcher who was instrumental in the development of ELMIRON®, believes it works by providing a protective coating to the bladder wall. He believes that some IC patients have a damaged or "leaky" bladder lining (epithelium). For those that do, the ELMIRON® coating appears to prevent urine, bacteria and other irritating substances from penetrating an otherwise "leaky" lining and causing inflammation in the muscle tissue.

                              http://www.ic-network.com/handbook/oral.html
                              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

                                • #9
                                  Ya'll are Awesome!

                                  I just wan to give everyone who has replied to my questions a huge THANK YOU. It means so much to know that people are out there who want and can help. I'm still very new to all of this and trying to figure out how to maneuver my way around here, I guess though I have plenty of time to do that,lol. So just thanks for all your support.
                                  Sincerely,
                                  Jennifer
                                  " Home is ultimately not about the place to live but about the people with whom you are most fully alive. Home is about love, relationship, community, and belonging, and we are all searching for home."

                                  " Our ability to endure, to persevere, to overcome is fueled by this one seemingly innocuous ingredient called hope."

                                  I'm reading this book by: Erwin Raphael McManus called Soul Cravings. I saw these passages and decided to share them with you.





                                  http://i189.photobucket.com/albums/z...rom2007006.jpg
                                  http://i189.photobucket.com/albums/z...art/new259.jpg
                                  http://i189.photobucket.com/albums/z...t/100_0123.jpg

                                    Comment

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