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  • #1

    Need help!!!

    Ok, I have been in a flare off and on for a month now. I have only gotten 1 or 2 day at a time where I feel decent. I am pretty sure it all started as a result of a really stressful day. I currently take elmiron, cymbalta, prelief, and a probiotic everyday. I have only been on Elmiron for 3 months. I have Urelle also, but it doesn't seem to help much. I do not vary from the diet(to afraid). Is there anything else I can try??? I have 2 boys to care for, they are 4 and 1, so I cannot take anything that will knock me out.

    TIA
    Jennifer
    Jennifer

    Current Conditions

    Endometriosis Feb 02
    Depression May 05
    Interstitial Cystitis Nov 06
    Fibromyalgia May 07
    Suspected IBS

    Current Meds.
    Elmiron, Cymbalta, Prelief, Probiotic Daily
    Urelle and Tramadol as needed for pain

    http://www.myspace.com/all4my2febboys
    Tags: None
    • #2
      Jennifer,

      When you say flare, What do you mean? Pain, Frequency, Burning, Or all of them.. Just wanted to pin that down so we could help you

      Ronda
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment

        • #3
          If I'm having pain, which is what flare means to me I use a heating pad a lot. I put something on the tv that Griffin likes to watch (almost 3) and then usually I can relax and use the heating pad.
          Christine



          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
          I have tried every oral medication as well as rescue instills and DMSO.

          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
          Also proud mom to the best Bullmastiff on earth, Claus

            Comment

            • #4
              It is mostly pain but the frequency varies day to day. I don't have trouble with burning.
              Jennifer

              Current Conditions

              Endometriosis Feb 02
              Depression May 05
              Interstitial Cystitis Nov 06
              Fibromyalgia May 07
              Suspected IBS

              Current Meds.
              Elmiron, Cymbalta, Prelief, Probiotic Daily
              Urelle and Tramadol as needed for pain

              http://www.myspace.com/all4my2febboys

                Comment

                • #5
                  Hi Pookie,

                  Have you spoken to your uro about rescue instills or DMSO?? When my flares last more than 6 weeks, I ultimately have to go on a course of 6-8 week treatments of the DMSO. Rescue instills are also a good remedy - but you need to speak to the docs.

                  About a year ago, I found that it is not so much my diet, but either stress, sex, or exercise that bothers my bladders and sends me off into a flare....

                  Good luck - I hope you feel better soon.

                  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

                    • #6
                      If you haven't been in touch with your doctor, I suggest you do so. There may be some things you can try that will offer relief. Are you drinking enough water? That can be very important.

                      Sending gentle hugs,
                      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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                        • #7

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