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  • progressive or not?

    so i have been trying to figure out if IC symptoms are progressive and I keep finding different answers. does anyone know a reliable source to find out if this is progressive?
    Onset of symtoms November 1, 2006

    Diagnosed December 8, 2006 with cysto/hydrodistention... Gradual relief with elmiron around month two, keep feeling better and better. and then remission

    2008 Update...still in remission

    Diagnosis: IC
    Meds: Elmiron 300mg/day, hydroxyzine 25 mg 1x/day

    Myspace: Add me! Im always looking make new IC friends. http://www.myspace.com/45171133

  • #2
    I really think it depends on the person and the cause of the IC. I personally believe that the cause is different in everyone. Some believe theirs is caused by a bacteria, and some believe theirs is caused by an immune disorder, or that it was caused by a surgery etc..
    I dont think anyone can say whether IC is progressive or not, not even the doctors as they themselves do not even know much about this disease. Maybe one day they will figure something out about what the causes are for IC and hopefull find a cure. But I honestly believe that the bladder is the inocent bystander in this and that we need to find the cause and cure that. I keep praying one day that will happen.
    My only advice I can give is to keep doing research and keeping looking for answers. I think we all have to advocate for ourselves when it comes to our health. I mean no one knows your body better than you do. I have alot of health issues going on with my stomach, bladder, I get this weird burning in my throat at times, actually had it for two years straight before it got better, and have some slightly abnormal blood tests. I personally think all these issues I have are related. I got sick with my stomach almost 4 and half years ago, and then came the throat burning about three and half years ago and now the IC since last May. It is all connected somehow, just not sure how. Maybe one day I will have the answer.
    Anyhow, sorry I cant answer your question, and I dont think anyone can, as noone really knows. This disease seems like it is different in how if effects each of us. I do hope you can get better and get some relief very soon though. Big Hugs!
    Jen

    Comment


    • #3
      My doctor, one of the top IC specialists in the country, says that IC usually does not progress more than during the first 18 months if it's a sudden onset. For me, over time, I have gotten better due to the treatments & diet that I've followed. I did have a sudden & severe onset.

      Another doctor I heard speak on IC says that most patients have low level symptoms for years, usually starting in the teens that gradually progress. This was not my experience, nor was it the experience my mom had with her IC.

      Basically, just take it one day at a time & if you have the option to get disability insurance at your job it might be worth the extra $ per month for the peace of mind.
      Kadi

      -------------------------------------------------------------
      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.
      ------------------------------------------------------


      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
      Source - Pinterest
      "


      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!

      Comment


      • #4
        I have a very severe case of IC--both of the Uro's (one is a specialist in IC; the other is my regular Uro) both have told me this-probably because I wasn't treated right away--it took over 5 years to figure out what I had- Both of these doctors and my Pain Management doctor have told me over and over that there is really nothing they can do for me--(due to my heart condition I can't get off my coumadin) except for taking Elmiron which helps to some degree,vesicare (just started and it seems to help)pain medications, Effexor and having hydros every 6 months or so--this is the only thing that my cardio and Uro's have agreed on to let me have that I'm able to get off my coumadin).

        Comment


        • #5
          Only a very tiny percentage of patients have their IC progress beyond the first year or, at the most, two years. My IC was diagnosed in 1975 and has not progressed --- in fact, I am better because of treatment and diet.

          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


          • #6
            Confused about the progressive answers

            Good question, I'm confused about this too...

            So, is it beneficial to get diagnosed early? or wait until the symptoms become a problem in your life? My symptoms are mild, and don't affect my everyday life. But the progressive question is a big question.

            If it does progress.. Then I should get diagnosed early, and start treatment, maybe I won't get bad?

            If it doesn't progress, I don't want treatments that could cause side effects for mild symptoms.

            decisions, decisions...
            ~Diane
            dx: Spastic Bladder, chronic hematuria (that went away?), kidney stone... possible IC

            Medical History:
            c-sections: 1988, 1991, 1997
            Viral Arthritis 1998 (Like RA, but went away!! )
            Pterygium & Dry Eyes since 2005
            Hysterectomy (Fibroids) 2006

            ~~~~~~~~~~~~~~~~~~~~~~~~~

            Me & Jerry ~ Sammy & Ryan
            ~~~~~~~~~~~~~~~~~~~~~~~~~

            Comment


            • #7
              Diana

              Always err on the side of "nipping something in the bud." By the time your problem is interfearing with your life, it has progressed.
              Sammi

              Sammi

              Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
              Diagnosis: IC, PFD (both in remission)

              Comment


              • #8
                Things you can do to manage IC at a low level...

                Reducing bladder irritants in your diet is a very simple intervention with no side effects if you make sure to stay nutritionally balanced.
                Finding ways to manage stress & relax well is another thing you can do at any level of IC.
                If you need more than that to manage the IC, start out with only one medication (perhaps Elavil or Atarax), and start at the minimum dosage.

                That's all I can think of...

                (My IC started overnight & severely, so I didn't have time to even think about being ok then progressing. I'm grateful for every good day I have & grateful for the medicines that are working today.)
                Kadi

                -------------------------------------------------------------
                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.
                ------------------------------------------------------


                New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                Source - Pinterest
                "


                Current treatments:
                -IC diet
                -Elavil 50mg at night
                -Continuous use birth control pills (4-5 periods/year)
                -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                -Pyridium if needed,
                -Pain medicine at bedtime daily, as needed during the day several times per week
                -Antibiotic when doing an instillation to prevent UTI
                -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                -Dye Free Benadryl 50 mg at bedtime
                -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                -Managing stress= VERY important!
                -Fur therapy: Hugging the cat!

                Comment


                • #9
                  mine happened suddenly overnight too, so If I immediately got medication, is it most likely that I should not ever experience that initial flare (if I stay on the medication then)? if this is so, that would be wonderful, but who knows I guess, IC is crazy!
                  Onset of symtoms November 1, 2006

                  Diagnosed December 8, 2006 with cysto/hydrodistention... Gradual relief with elmiron around month two, keep feeling better and better. and then remission

                  2008 Update...still in remission

                  Diagnosis: IC
                  Meds: Elmiron 300mg/day, hydroxyzine 25 mg 1x/day

                  Myspace: Add me! Im always looking make new IC friends. http://www.myspace.com/45171133

                  Comment


                  • #10
                    [QUOTE=kadi;331308]My doctor, one of the top IC specialists in the country, says that IC usually does not progress more than during the first 18 months if it's a sudden onset. For me, over time, I have gotten better due to the treatments & diet that I've followed. I did have a sudden & severe onset.
                    QUOTE]

                    That's exactly how mine progressed from mild to severe over the first 18 months, then with time, diet, meds it has for the most part stabalized to a level that I can manage with my diet and a minimum of the meds in my sig. But I still do have flares, some that last for months on end. I consider a flare symptoms above and beyond what my usual meds can handle. I also had sudden onset of mild IC symptoms and severe vulvodynia symptoms, and over those first 18 months both conditions reached the severe level, then tapered off to mild and easily managed with my meds. Right now I have been in a flare for a few months, I think it's due to exteme stress I've been under since last fall. But besides this flare, I can say that during "normal" times, I have many more days without symptoms than with symptoms, as long as I watch what I eat and drink. Even the flare I am in now, while very painful, is nothing compared to the symptoms I felt during those first 18 months!

                    Comment

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