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  • Elmiron and Pain

    I've only been on Elmiron for 5 days but I am now experiencing tremendous bladder pain. I've never had this much pain before so I'm thinking it's the Elmiron.
    Anybody else have this problem? This does not feel like a normal flare. The pain is increasing everyday which is making me think it's the Elmiron. There is absolutely nothing else it can be. I am eating and doing the same thing I've done for 2 years.
    Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

    Tried:
    Detrol:only took one pill and it made me sick
    Elmiron:caused horrible pain(took 1 week)
    CystaQ:caused alot of burning and pain(only took one pill)
    Wellbutrin:only on it for three days as it caused alot of bladder pain
    Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
    Prelief:made my bladder burn and feel tingly.

    Take:
    Uracyst:Started May 19 2011
    Enablex:take one pill daily with no issues
    Naproxen:for pain as needed
    Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
    Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
    Supplements:Whey Protein powder daily
    Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

  • #2
    I haven't heard anyone say they have had this problem but it could be the elmiron. I would say the only way to know for sure is to stop and see if the flare gets better. Be sure to let your DR know, as I am sure you know to do already.

    I hope you find the root of the pain soon, flaring is no fun and you sound like you are in a lot of pain.

    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment


    • #3
      sailawaygrl thank you for your response. Yes I have been uncomfortable and today was the worse. I had to take Naproxen for the pain to get through my work day. I am going to stop the Elmiron for a few days and see if the pain goes away. The other thing too is that it was affecting my moods. I will call the doctor tomorrow and see what he has to say. I was really hoping it would help. My next step/choice is Uracyst. My doctor mentioned it on my last appointment. I hope that helps.
      Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

      Tried:
      Detrol:only took one pill and it made me sick
      Elmiron:caused horrible pain(took 1 week)
      CystaQ:caused alot of burning and pain(only took one pill)
      Wellbutrin:only on it for three days as it caused alot of bladder pain
      Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
      Prelief:made my bladder burn and feel tingly.

      Take:
      Uracyst:Started May 19 2011
      Enablex:take one pill daily with no issues
      Naproxen:for pain as needed
      Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
      Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
      Supplements:Whey Protein powder daily
      Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

      Comment


      • #4
        Some people find the capsule containing the elmiron is the problem. You might want to talk with your doctor about trying emptying the capsule into water and take it that way, discarding the empty capsule.

        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


        • #5
          Hi Carole,
          Elmiron made my IC much much worse. It felt like I had something scratching the inside of my bladder and increased my frequency to the point I couldn't even drive the 25 minutes home from work without having to stop to find a bathroom. I called the nurse at Ortho McNeil and she said they have seen that some patients allergic to sulfa, do not do well with Elmiron. Since I'm allergic to sulfa, I stopped the Elmiron and got better again. I was on the Elmiron for 2 months. Once I stopped it, I was better in about 2 weeks. I was so disappointed because I'd so much hoped it would work!!!

          Fortunately, pelvic floor physical therapy and home instillations of marcaine, heparin, sodium bicarbonate, were helpful, so while it was disappointing that the Elmiron was a failure, I did find other things that worked! I'm just saying this because my urologist at the time was so upset that I'd had a bad reaction to the Atarax and Elmiron, he told me he had nothing more to offer me and I was desperate. He did refer me to Stanford and the doctor there prescribed the physical therapy,pain medication as needed, and the home instillations. I don't want you to feel like you're out of options - there are still treatments out there to try.

          Good luck! I hope that the Elmiron does work out for you, but if it doesn't - do try one of the other options - they can really help!

          Best,
          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


          • #6
            Donna I thought that was if it was causing nausea. I don't have any nausea just bladder pain.
            Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

            Tried:
            Detrol:only took one pill and it made me sick
            Elmiron:caused horrible pain(took 1 week)
            CystaQ:caused alot of burning and pain(only took one pill)
            Wellbutrin:only on it for three days as it caused alot of bladder pain
            Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
            Prelief:made my bladder burn and feel tingly.

            Take:
            Uracyst:Started May 19 2011
            Enablex:take one pill daily with no issues
            Naproxen:for pain as needed
            Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
            Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
            Supplements:Whey Protein powder daily
            Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

            Comment


            • #7
              Thanks Kadi I will try Uracyst and see how that works. I've always been so sensitive to medications sometimes I wish I wasn't but that's just who I am and I can't change that. I will be calling my urologist today to see what he says but I didn't take the Elmiron lastnight or this am. I was so uncomfortable yesterday and just didn't want to go through that again today. I am hoping that the pain will be better today. Thanks everyone.
              Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

              Tried:
              Detrol:only took one pill and it made me sick
              Elmiron:caused horrible pain(took 1 week)
              CystaQ:caused alot of burning and pain(only took one pill)
              Wellbutrin:only on it for three days as it caused alot of bladder pain
              Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
              Prelief:made my bladder burn and feel tingly.

              Take:
              Uracyst:Started May 19 2011
              Enablex:take one pill daily with no issues
              Naproxen:for pain as needed
              Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
              Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
              Supplements:Whey Protein powder daily
              Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

              Comment


              • #8
                I also felt more frequency with the elmiron for some reason..I am also allergic to sulfa drugs. Carole have you tried Cystoprotek? I am having good success with that.
                _____________________________________________

                Comment


                • #9
                  Kadi and Tracieg, have you the same reaction with Glucosamine sulfate, Chondroitin sulfate and MSM (active sulfur) ? and what kind of test did you take to know that you are allergic to sulfa?

                  I am asking because I also had problem when I tried the Elmiron and I also have problem with glucosamine,chondroitin and msm. I would like to know what test I can do to be sure.

                  Comment


                  • #10
                    I had trouble with Cystoprotek - gave me a migraine, vomiting & more bladder pain. But, I found out in allergy testing that I'm very allergic to fish & shellfish and cystoprotek has that in it. I've not tried glucosamine or chondroitin or msm - so don't know about those.
                    Sorry, wish I had something helpful on this one
                    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


                    • #11
                      tracieg no I have not tried Cystoprotek. Even though I've had IC for 2 years I have tried very little. I've gotten by with the diet and Enablex up to now. The Elmiron was my first try at anything else. I will see what the Uro suggests from here but I'd like to try the Uracyst.
                      Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

                      Tried:
                      Detrol:only took one pill and it made me sick
                      Elmiron:caused horrible pain(took 1 week)
                      CystaQ:caused alot of burning and pain(only took one pill)
                      Wellbutrin:only on it for three days as it caused alot of bladder pain
                      Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
                      Prelief:made my bladder burn and feel tingly.

                      Take:
                      Uracyst:Started May 19 2011
                      Enablex:take one pill daily with no issues
                      Naproxen:for pain as needed
                      Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
                      Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
                      Supplements:Whey Protein powder daily
                      Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

                      Comment


                      • #12
                        Originally posted by kadi View Post
                        I had trouble with Cystoprotek - gave me a migraine, vomiting & more bladder pain. But, I found out in allergy testing that I'm very allergic to fish & shellfish and cystoprotek has that in it. I've not tried glucosamine or chondroitin or msm - so don't know about those.
                        Sorry, wish I had something helpful on this one
                        Kadi I also had pain with Cystoproteck and I am not allergic to shelfish but maybe I had pain because it has Glucosamine sulfate and Chondroitin sulfate in.

                        Comment


                        • #13
                          Originally posted by Landish View Post
                          Kadi and Tracieg, have you the same reaction with Glucosamine sulfate, Chondroitin sulfate and MSM (active sulfur) ? and what kind of test did you take to know that you are allergic to sulfa?

                          I am asking because I also had problem when I tried the Elmiron and I also have problem with glucosamine,chondroitin and msm. I would like to know what test I can do to be sure.
                          This is very interesting! I recently bought a supplement with glucosamine, chondroitin and MSM and each time I took it I had burning, which I never usually have. I haven't tried it again but it must be the MSM?? I do take cystoprotek but maybe should cut it out for a few days and see how I feel. I am taking elmiron but haven't noticed anything bad yet and I too am allergic to sulpha (I developed hives the last time I was given it for an infection).
                          Cindi


                          Gelnique for frequency/urgency - works great
                          Macrobid after sex
                          Prilosec, continuous birth control pills
                          synthroid .088mg, mucinex-d, restasis

                          Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                          Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                          IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                          AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                          AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                          Great treatment flowchart on page 19 of the pdf

                          Comment


                          • #14
                            Unfortunately the only way to find out is taking it one by one.

                            Comment


                            • #15
                              I had an awful time with Elmiron both times I tried it. 5 yrs ago I took it for a year and my baseline, daily pain level was much higher. I felt so much better after stopping it. I just tried it again a month ago and I was in pain the whole 7 days I was on it. Once again, after quitting I felt much better. I suppose it helped to put the pain in perspective.
                              FYI, I am not allergic to sulfa drugs.
                              "You can stand me up at the gates of Hell, but I Won't Back Down."
                              -Tom Petty

                              Comment

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