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I'm so confused!! elmiron or cystoprotek

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  • I'm so confused!! elmiron or cystoprotek

    I'm so confused! I finally got my elmiron approved by bc/bs and it went from they weren't going to cover it, which meant 350.00 a month to now only a 30.00 copay. I'm just so scared of any side effects i may get. Any thoughts would be greatly appreciated.
    Thanks so much

  • #2
    One important thing to remember is that if you do have any side effects, the side effects usually disappear when the medication is stopped. Elmiron gave me a non stop headache --- the headache disappeared within 48 hours of discontinuing the medication.

    Stay safe

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    • #3
      Thats excellent news! I have to pay 120/mo. I would definitely try elmiron first or you can actually do both, they are not the same. I have been on cystoprotek for a year and it hasn't helped me. The elmiron I've been on 3 weeks and I can already tell its helping because I can eat more things I haven't been able to eat for the last 6 months, I"m feeling pretty hopeful now

      They both can cause stomach upset. I've read you can empty the elmiron contents into water and just drink it as the capsule seems to be the irritant. I take omeprazole with my dose and it takes care of any stomach upset. It can cause diarhea in some though I have not had that particular side effect. If you do, you can increase your calcium intake. It did give me a headache for a couple of weeks which finally seems to be gone. It wasn't a severe headache, aleve got rid of it. Other then that I personally haven't experienced any other side effects. I am very sensitive to meds and usually get even the rarest of side effects but so far those are the only 2 I've had.

      My question would be why not try it? You might be one it really helps. It helps 40-50% of those who take it.

      Good luck!
      Last edited by cmclien; 03-22-2011, 08:40 AM.

      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:
      AUA 2011 Guidelines to diagnosing and treating IC overview-
      AUA 2011 Guidelines to diagnosing and treating IC PDF:
      Great treatment flowchart on page 19 of the pdf


      • #4
        I started the elmiron on the same day that cindi did and I noticed that it hurt my bladder worse. I tried the cystoprotek and with in that day of taking cystoprotek I felt a difference. I might try the elmiron again soon to see if it still hurts or if it was something else.


        • #5
          I've been using Elmiron for over a year and feel normal almost all the time now. I have had some minor digestive issues, but I had those before I started the drug, so who knows? Anyway, it's a miracle and it works great! So at the very least try it for 6 months!
          Your Friend,

          Diagnosed: 10/16/09

          Elmiron, 100mg 2x per day
          Imipramine, 10 mg per day
          Diazepam 10 mg for sleep
          Zovia, birth control (ongoing-no periods)
          Hydrocodone, 2 pills a day (at any time of day)


          • #6
            Try elmiron while it is cheap. I just lost my prescription insurance and now I have to try to get it from Canada and it is still $200/mo. So take advantage of what you got because you never know.
            I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.


            • #7
              Saradep - I am facing the same problem with my BCBS insurance. How did you get them to cover it? Did it just take a note or call from your doctor? I would appreciate any assistance you could give!