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  • New to IC

    I just found out two weeks ago I have IC. "WOW" so painful and so confusing. I got the following medicine, U.T.A., Emirol, and prelief. I have not started the Emirol, I am afraid of losing my hair, has anyone used this drug long-term? I have gotten so many conflicting stories on how to handle this disease. I live in Decatur, Al., I am going to see a IC Specialist in Guntersville, Al soon.

    If anyone can tell me a good doctor close to me I would be greatful. My pain is so severe that tylenol is not helping and the Urologist that diagnosed me said he did not believe in giving pain medicine. My pain for now is constant, my prayer is that it it will ease up soon.

    Any and all advice is helpful!

  • #2
    Hello and welcome the ICN. I am sorry that you have IC, it is a bit difficult to deal with a diagnosis like this. I see that you have been given elmiron, please go ahead and start taking the medication. It is very rare that we have any hairloss from it and if you do, you can just stop the meds and it will grow back. Elmiron can take a while to work as it has to build up in our system, it is thought to work by "rebuilding" the lining of our bladders, known as the GAG layer. The sooner you start taking the meds the sooner you can find relief. It is good that you are going to see a specialist. If you go and that Dr is also unwilling to give pain meds you might want to ask them if they will refer you to a pain management clinic, or you could see if you PCP is willing to take care of your need for pain management. Hopefully you will start seeing improvement soon and won't need them for long. Please also take a look at the IC Diet on the home page of this network. It can help a lot by just letting you know what you should be eating and drinking in order to sooth your bladder. Diet can help some people tremendously.

    Once again, welcome to our "family of IC friends". Hoping you have good days ahead.
    Sandra this is the link for the diet Please take a look at it and try to make some adjustments, it is usually best to start with the first column of foods
    Last edited by sailawaygrl; 02-23-2011, 05:03 PM. Reason: added link
    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


    • #3
      to the IC Network.

      Only a very small percentage of people taking elmiron have hair loss. And Sandra is right; when the medication is stopped the hair fills in again. I suggest that you do what I call a hairbrush test before starting elmiron. Take a hair free brush and brush your hair thoroughly. Then comb the hair from the brush and store it in a plastic sandwich bag. Then if you feel you are losing hair you can do another hairbrush test and compare it with the stored hair. We all lose some hair so it's good to have a comparison.

      Most people who are helped by elmiron continue to take it. It's not a permanent cure.

      Warm welcoming hugs,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      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:


      Diet list:

      AUA Guidelines:

      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.

      Anyone who says something is foolproof hasn't met a determined fool


      • #4
        I hope your pain has been relieved since you posted this message. I live in Decatur as well and was diagnosed with IC by Dr. Kari Kubik. She is at Parkway Hospital Women's Center. Her office is called Urology Center of North Alabama, I think. The number is 256-351-6154. She was wonderful and very thorough. She put me on Elmiron but after 2-3 months, there were abnormal levels of something in my liver so I had to stop. She told me about an herbal supplement that many urologists has talked about called Cystoprotek. It treats the inflammation response in the body. It did help my symptoms but stopped b/c it is a little pricey ($40/bottle for 1 month supply) and my symptoms very mild at the time. I have had such a bad flare up in the last week though, that I'm going to get back on it. Hope this info helps!


        • #5
          Originally posted by teresabh View Post
          My pain is so severe that tylenol is not helping and the Urologist that diagnosed me said he did not believe in giving pain medicine. My pain for now is constant, my prayer is that it it will ease up soon.

          Any and all advice is helpful!
          Personally, I would talk to your family doctor about pain control. Most urologists "don't believe in giving pain medicine," which is a strange attitude to have about managing a chronic pain condition, but urologists aren't really trained to deal with chronic pain. Your family doctor may be more flexible about working with you to manage your pain. It's worth a shot.

          My experience has been that once I get my pain under control, I can use things like Elavil or Tylenol to manage it better. I think I got a bottle of 20 vicodin last year at the ER and I still have a few left. I don't need them often, but sometimes they are useful.

          PS Diet modification is very important to helping any of these treatments work. It can help you lessen the pain by avoiding food/drink that triggers your symptoms.

          40 y.o. mom, wife and marketing manager

          "Il faut manger pour vivre, et non pas vivre pour manger." -- Moliere ("One should eat to live, not live to eat.")

          IC symptoms began Feb 2010; diagnosed Mar 2010


          Elmiron 3x day; Elavil 25 mg/day; Prelief (when I remember!); Benadryl and Prosed DS as needed for flares

          Acupuncture 2x/month; yoga; IC Diet; meditation and breathing exercises for stress; heating pad for flares