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    Dear fellow IC sufferers:

    1. I want to know how many of you taking oral Medication for IC.

    2. How many of you having bladder Instilllations. (like DMSO & all) How long you have been having this treatment. how often you go to doctor's office.

    3. do you ever feel whatever you are having treatment it's not working after a while. I feel that way now. I am having a very hard time to control my symptoms now. My Uro change all my medications now to see if i feel better on that. Iike My Antidepressant, Antihistamines & my pain medications. he think what i was taking earlier stop working now. My system use too these medications & now it is time to start Change to diffrent onece. i want to know how many of you feel that way like i am feeling now.

  • #2
    Sorry you are going through a hard time right now. I hope your new meds work for you.

    My meds are hydroxyzine (atarax), elavil, oxytrol patch, percocet and ditropan as needed. Also, cipro every time I have sex and prelief with acidy foods.

    I have had 1 bladder instill (not DMSO) during a cysto/hydro in June 2003. My frequency and urgency become much worse after this procedure (I know this is not the norm).

    I am still struggling with getting my symptoms under control. I am worse now than I was a year ago. I have been taking elavil for about 6 weeks. Not much results yet, but praying it will help.

    Hang in there,


    • #3
      Sorry you are having a rough time. Have you tried Elmiron? And, if so, how long did you take Elmiron and other meds?

      My history on medication is short, as I was just diagnosed with IC in November 2003 using the cysto/hydro procedure.

      My meds are:

      Elmiron 3 x day-bladder
      Toframil-IC pain/sleep (haven't started taking yet)
      Milk of Magnesia-IBS

      I still have IC pain/frequency and constipation from IBS, but feel a little better. It may be to soon to tell if my meds are making a difference because I am still in the trial & error phase. My doctor (and from what I read) all suggest 4 to 9 months to see improvement.

      Everyone seems to respond to different meds and in different time frames.


      • #4

        Yes, i am still taking Elmiron 300mg. 3x day. Elmiron helped me but not anymore i think. My Uro want me to take it anyway for while.My frequency and urgency become much worse these day.


        • #5
          Sorry you are having a tough time. I couldn't take Elmiron, I have tried many anti-depressants and nothing helped. I tried DMSO, again no help. I tried interstim, did not work. I currently take pyridium plus, hydrocodone and the IC diet.


          • #6
            I was any of you guys know... Since IC is diet responsive, is it not safe to say it is medication responsive? In other words, I wonder if the reason some of you guys have so many problems still is BECAUSE you are on so many meds. Does anyone know if a doctor has done a study on this. This definately makes sense...our bladders may be irritated by certain medications. I take Elmiron, and only Elmiron, and this has helped. Of course, everyone's IC seems to be different. I just think this may be something to consider... I hope that you guys can all find a combination that gives you relief. Like I said, I only take Elmiron daily. I have Atarax--as needed--but have not used it yet. I was diagnosed with IC on Jan 14, 2004. So I am new to this...not to the IC--which I now realize I have had for 9 years


            • #7
              Sorry that you are going through such a rough time right now. I am on oral meds, Elavil, Effexor, Ultram for pain when needed and Ambien for sleep. After my diagnosis, I was put on several meds that did not work for me, was offered DMSO for six weeks, but I said no, and we tried the previously mentioned combination of meds, and so far so good. I have miniflares, but nothing like the ones I was experiencing. I have check up visits every two months with my Nurse Practitioner, and my Urologist once a year unless I start having problems, with the meds, or extreme pain then when needed. So far, fingers crossed, everything is working, and I am able to live a fairly normal lifestyle, Take care Iris. hi hat
              Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


              • #8
                sorry you are having it tough right now hope you feel better soon. i use klonopin lexiapro leviquin heparin marcaine perocet 10.325. grouphug
                Medicine taken daily or as needed:
                1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                2. MS.Cotin 100mg 3x daily
                3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                4. Fentanyl 100 mg Change every 48hrs.
                5. Gentamicin 80mg install after each rescue treatment
                5 Leviquin 500mg self start as needed.
                6. Klonopin 1 or 2 daily as needed.
                7. Prosed/DS as 1 every 6hrs as needed.

                I have IC, but IC doesn't have me anymore!


                • #9
                  I couldn't take elmiron due to side effects.

                  My major treatment for the past 29 years has been hydrodistentions, along with bladder instillations.

                  I am currently on a DMSO schedule of one treatment per month, which seems to do well for me. I started with eight weekly treatments before moving to the monthly schedule.

                  I also have pyridium on hand, pain medications to take as needed, and phenergan to prevent nausea any time I take a pain med. I also take a prescription potassium supplement, and a couple of meds for high blood pressure.

                  --- And I feel good most of the time.

                  Stay safe

                  Elmiron Eye Disease Information Center -
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                  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


                  • #10
                    I am currently on DMSO treatments once a week. They have worked for me pretty good, except I really have to work on the my IC diet. I am human and I do eat or drink stuff that is bad for me. For example, too much frozen yogurt is a bad thing! (I had it 4 times (4 days) in a row! I suffered, let me tell you! I had to reach for the Pyridine! So with trial and error I am still learning what not to eat and what I can eat. I also have prelief which helps me as well. Although I have to watch how much I take as I get constipated and I have already had a case of hemmoroids because of it! Not nice :-(



                    • #11
                      My Daughter (6) takes ditropan xl, atarax and uses prelief and pyridium when needed. Her frequency is so much better even with a uti. Diet is hard for her too, she does better with it than I would be able to though! All the birthday parties with pizza and chocolate cake are tough! I hope you feel better soon.


                      • #12
                        Someone mentioned that medicines may also be irritating just as diet is. I agree with you. I wish I could remember where I read it, but many of those pills we take contain artificial ingredients such as colors that are irritants. So, while the medicine itself may be okay--the little shell sometimes contains things that wouldn't bother most, but would bother us.

                        I currently use the oxytrol patch, Elmiron 3x per day, aloe supplements from, Nitrofurantion (Anti biotic to keep out infection.) Vitamins A & E & B6. Also, Vicodin or Ultraset for the pain as needed.

                        I've been taking the Elmiron for 9 months and I haven't had any relief from symptoms. If anything mine have gotten worse.

                        I've tried EVERY other medicine I've ever seen posted on these websites/webboards with no results. Only thing I have tried are the DMSO instillations. But, my doctor said my body wouldn't tolerate them. I wasn't able to do the cysto in the office (couldn't even get close). So, the DMSO isn't really an option for me.
                        I do have the interstim implant and that helps to an extent. It helps with how many times I urinate, but not necessarily the pain.

                        Hope this helps--


                        • #13
                          I am on Elmiron, Vistaril, Detrol LA, Elavil, and Lexapro.

                          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


                          • #14
                            I take Elmiron, Vistaril, detrol prn and watch diet and use Prelief.

                            "Life is what happens when you are making other plans" John Lennon

                            IC diet cheat sheet....

                            Information for Patients can be found here.

                            Jen's tips for great IC sex..[/url]

                            Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                            "IC Angel 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."


                            • #15
                              I'm on Elmiron 400mg, Neurontin 300mg, Elavil 50mg, Attarax 100mg, Zanaflax 4mg, Celebrex 100mg, Yasmin (B.C pills), Zoloft 50 mg, and then Morphine 30mg prn for pain, Pyridium prn, and various antibiodics when I have an infection currently levoquin.

                              I also get daily Heparin/Marcain/ bisodium carbonate bladder instills.

                              Am getting the test interstim this week.