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  • Who has been helped by Elmiron?

    I was just curious who all here on the ICN has been helped by oral Elmiron or the instills?
    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
    ME! ME! ME! I have done so well on oral Elmiron and Elavil combo. I didn't get any of the icky side effects either. I've been off the Elmiron for a month now and have been doing pretty good. I've been off Elavil for about a week and have had a few small flares, but nothing compared to what it was.

    Comment


    • #3
      I've been on Elmiron since the start of Nov and I have to say I can't really see any difference from it. I saw a big improvment when I started the Elavil a couple of weeks ago but nothing from the Elmiron. I'm wondering if it's one of those things where I don't notice the difference but if I stopped it I would be much worse. Uro wants me to stay on it a little bit longer. Since it costs me such a fortune I think I'm going to ask him if I can try to go off of it when I see him in July. If I don't get worse then I'll stay off of it, I hate to spend all that money on a med I don't think is working.
      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
        Why I am asking is because I think its my next step..I am not having much bladder pain, but I am aware its there, but still sometimes get that got to go feeling even though I just went, Does Elmiron help with that?
        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


        • #5
          I used to have that feeling of having to go a lot. I have been on Elmiron since last August and don't have that feeling anymore much! I do still have a lot of bladder pain though. I can't say for sure if it was the Elmiron that helped with the urgency. I am also taking Effexor, Uricit-K, Cysta-Q (just started that), and MS Contin. I hope you get more responses. I am sort of curious if I'd feel different going off the Elmiron, but do not want to try that yet. I think it can take a long, long time to work.
          I like to snack a lot and since you're supposed to take it on an empty stomach I've skipped a lot of doses. I think I want to stay on it at least 2 years to see if it will help anymore with my pain.

          Comment


          • #6
            Hey girlie, I have to say that Elmiron in combo with my other meds really helped me out a lot. I now take Cystoprotek to keep up the good work that the Elmiron did, lol. I did however have to do the dump-the-med-into-a-bit-of-water thing due to horrid heartburn I was having. But once I started doing that, no more problems with hearburn!
            Hugs,
            Tracey
            How do you eat an elephant? One bite at a time...

            Harry arrived 2/23/09!



            *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.

            IC Diet Cheat Sheet:
            http://www.ic-network.com/diet/2009icdietlist.pdf



            Dx's:
            IC dx'd Nov 2004
            Lymphocytic Colitis dx'd July 2005
            Possible IBS
            Current IC Meds
            Vistaril 25mg in the evening
            Previous IC Meds taken:
            Cystoprotek - 2 caps 2x's a day
            Elmiron, 100mg 3x's a day
            Ditropan, 5 mg 3x's a day
            Others:
            Wellbutrin 150mg 2x's a day for Anxiety/IBS
            Pepcid 40mg a day for GERD
            Zytrec for Nasal Allergies
            Align Probiotic daily for IBS

            Comment


            • #7
              Frequency and urgency were my main symptoms, along with a burning/uncomfortable feeling in my urethra right after I'd void that would make me feel like I had to go again.

              Comment


              • #8
                I raise my hand as one lucky enough to be greatly helped by Elmiron...alone it wouldn't have been enough but the difference it made was huge.

                I do think that a bladder coat of some kind is a big part of treatment so if you don't respond to Elmiron and aren't interested in rescue instillations or they didn't work for you....I would look into the alternatives like • Desert Harvest Aloe Vera
                • Licorice Root (Soothing and coating)
                • Quercetin (may reduce the effectiveness of some forms of estrogen)
                • Glucosamine Sulfate
                • Mullein (protecting)
                • Slippery Elm (coating, don’t take near Elmiron)
                I do think your doctor should know what your considering in alternatives but
                Faith, Hope, and Love,
                Katrina


                I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                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.
                or find me on facebook http://www.facebook.com/kat671?ref=profile
                Be the Miracle! & Pay it Forward!

                [email protected] please contact me...I am here to help!

                Comment


                • #9
                  Meme, Thats the exact feeling I have..
                  I am going to GYN tomorrow going to ask her about putting me on it..Can you take it with other things like Cystoprotek or CystaQ?
                  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


                  • #10
                    I had the same symptoms... I stated elavil and elmiron in oct 06. I can see an improvement in my sypmtoms. I can work again, that says alot. I do take days off but not for a flare... for uti's b/c of the peeing ever 2 mins. Elmiron has helped me alot!!! I would deffinitly ask ur dr or gyn about starting it. What do you have to loose? I didn't loose any hair on Elmiron either. (knock on wood)

                    Rachel
                    ***Rachel***

                    Dance like no one is watching
                    Love like you've never been hurt
                    Live today like it's your last

                    Dxd with IC in June '06

                    Comment


                    • #11
                      I can see a big difference in my IC symptoms! I have been on Elmiron since July 06 and Elavil since Dec. 06. Most of my days are pretty much pain free unless I eat something I shouldn't. 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


                      • #12
                        I was on elmiron, among other meds, for a year and a half. i have to say that i noticed no real improvement with the elmiron. i decided to stop taking it because it contributed to flare ups of my irritable bowel. i've found heparin instills to be helpful and i began taking glucosamine sulfate a few months ago and i think i am just starting to notice a difference. hope elmiron works for you. i think it is definitely worth it to try it...as you can see it helps many. just make sure you give it at least 6 months, as it tends to take a while to take effect.

                        Comment


                        • #13
                          It has helped me immensely over the last almost 6 years - in combination with my other meds. It is the big one that helps me, the others help with the smaller symptoms. I have zero side effects from it and it continues to help me. It's been a godsend.

                          If you click on the link for my story below you can see what my symptoms were like. I don't have symptoms anymore, but it tells what they used to be like.
                          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


                          • #14
                            Thanks Kim..
                            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


                            • #15
                              Hey leelee, if you are interested in the Cystoprotek, you should check out the Algonot site, there's lots of good information there, it helped me out in making my decision etc. And you can take it with any of your meds, it's like the in-stores OsteoBiflex stuff, same types of ingredients etc, but a much better formulation for use by the body and formulated just for bladders etc. Just go to www.algonot.com, there's boatloads of information on that supplement!!!! I also know my knees creak a lot less now a days, lmao!!
                              Hugs,
                              Tracey
                              How do you eat an elephant? One bite at a time...

                              Harry arrived 2/23/09!



                              *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.

                              IC Diet Cheat Sheet:
                              http://www.ic-network.com/diet/2009icdietlist.pdf



                              Dx's:
                              IC dx'd Nov 2004
                              Lymphocytic Colitis dx'd July 2005
                              Possible IBS
                              Current IC Meds
                              Vistaril 25mg in the evening
                              Previous IC Meds taken:
                              Cystoprotek - 2 caps 2x's a day
                              Elmiron, 100mg 3x's a day
                              Ditropan, 5 mg 3x's a day
                              Others:
                              Wellbutrin 150mg 2x's a day for Anxiety/IBS
                              Pepcid 40mg a day for GERD
                              Zytrec for Nasal Allergies
                              Align Probiotic daily for IBS

                              Comment

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