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Could you please tell me what combination of meds have helped you..

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  • Could you please tell me what combination of meds have helped you..

    Hi everyone!! I got another question

    My GYN is changing up my meds< I see her for IC meds because my URO is a quack. Anyways I would like to know what combination of meds have worked for you all..And are you having more good days than bad? Thanks for all your replys. This will help me decided what I willl agree with or not..

    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.

  • #2
    See the list below my name. Yes, I have more good days than bad.
    For me, the birth control pill is the most important medicine, with Elavil a very close second, then the instillations.
    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


    • #3
      HI Leelee!
      It's Elmiron and Elavil that's helped me the most.....along with the Freeze dried Aloe Vera. Most of my days are good days now. Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #4
        elavil, definatley

        elavil - definatley

        elmiron made my hair fall out
        Quit ELMIRON due to hair loss
        Cystoprotek ROCKS!

        find me on FACEBOOK -
        search my email [email protected]

        Current Meds:
        AM Cystoprotek & ATARAX 50mg
        Dinner CYSTOPROTEK
        PM Elavil 25mg

        Comment


        • #5
          My bladder meds are listed in my signature. I've not had a bad bladder day in a few years.
          Kim

          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

          Comment


          • #6
            The only thing I really take is Elmiron and Effexor. Pain medications as needed.
            The only bad flare I had recently was this last week and thats been it in a long time.

            Comment


            • #7
              leelee...I take Elavil 25mg in early evening along with a Prelief or two if I think something might bother my bladder.

              PS...I am so sorry. When I responded to this post, I forgot your earlier one about your doctor taking you off Elavil. I am not much help, am I.
              Last edited by SharonA; 05-09-2007, 11:38 AM.
              Sharon

              Shopping??? Did someone mention shopping? I'll get my hat... ;-)

              Where I can be found most days.



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

              Link to the IC Diet:
              http://www.ic-network.com/diet/


              IC 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


              • #8
                I have more good days than bad with Lyrica. Sometimes I also use Fentanyl.
                Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                I also have some journals of my journeys, past and some present at:
                http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                Comment


                • #9
                  hydroxyzine
                  cystoprotek
                  vicodin

                  Comment


                  • #10
                    Thanks again for all your answers.. I am wanting to try elmiron, but am still scared of it.. I dont know why, guess I just do not like lots of meds..
                    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


                    • #11
                      What is detrol la for? I am currently taking Elmiron, Hydroxzine, Prelief and MSM/ with glucosamine. I am also taking estrace cream, replens and diflucan for my vaginal itching and burning. My main symptom is itching. I am wondering if it is related to my hormones. Last week my gyno put me on estrace cream for the exterior every night and replens twice a week to help with the dryness in my vagina. I was fine. Did the same thing this week and have been itching and burning for the past two days, mostly burning. It is around the time of ovulation and I am wondering if that has anything to do with it. I am going back to my uro in June and was thinking about asking him to put me on Elavil to see if that will help. Do any of you have any suggestions?
                      Diagnosed with IC - March 2007
                      Diagnosed with vulvodynia - June 2007
                      -Lots of prayer
                      -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
                      -Taking Prelief as needed (stopped because of pregnancy)
                      -IC diet

                      Comment


                      • #12
                        KristyV... Detrol is for the urgency.. You know that got to go go go feeling...
                        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


                        • #13
                          Ronda,
                          I've been on Elmiron since Nov and though I'm not going to lie, I haven't seen a difference I haven't had any side effects from it either. I had a much harder time starting the Elavil than the Elmiron. I would give it a shot, but check with your insurance first to see how much it is going to cost, it is soooo expensive. My insurance changes me $120 for 3 months and I have to get three months at a time through mail order because it is a maintance rx. I would maybe just get a month supply and see how you do so that way if you have side effects and don't want to continue it you don't waste all the money. I think it's at least worth a shot, it sounds like some people have really been helped by it. I think that I'm going to try to drop it out of my list of meds when I go back to the uro in July
                          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


                          • #14
                            I think I've tried almost all the med's listed over the years, and the only thing that really seems to help me is the Percocet. That's all I take now when I'm in pain and it usually gets me through. I'm not on any other meds for IC, I've given up on all of them, but that's just me, I don't seem to have to much luck with any of them.

                            Kari
                            Kari

                            I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

                            Comment


                            • #15
                              Medication combinations which have worked best for me:
                              NO ELMIRON: My hair started falling out in wads two weeks before my wedding...how much more stressful could it get?

                              So, my primary care internal medicine doctor focuses on treating the symptoms. I do the following:
                              Heparin/Lidocaine instillations as needed for bladder spasms and pain
                              Skelaxin, 800mg, every four hours as needed muscle relaxer (really helps when combined with pain meds or Valium in relieving bladder spasms..which, as we all know, can hurt BAD)
                              Duragesic patch, 25mcg
                              Meperdine (Demerol and Phenergan in pill form for breakthrough pain OR Vicoprofen, depending on the severity of it--Demerol is reserved when all other methods have failed because my pain specialist says it is not good for longterm pain, but he's willing to write me about 20 per month and that is sufficient for now).

                              Hope this helps!

                              Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

                              Comment

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