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  • Alternatives with same effect as Elmiron?

    Sadly, I'm one of those people that needs things laid out in the a neat little list before I can understand them. Haha.

    I'm pretty sure Elmiron is giving me weirdo stomach problems...no hair loss, but I feel bloated and gross all the time these days. So I figured I would try going off it for a bit...see if that helps. Plus I think it's made me gain weight, which is something I cannot afford to have happen to me.

    I've heard of Desert Harvest...but are there any other kinds of Aloe out there that we can take with the same effect. That stuff is just so darn expensive! I'm just reluctant to stop Elmiron without having something else to take that does virtually the same thing.

    And unfortunately instills aren't really an option for me..the only place I know of that does them (and it's like $8 an instill which is great.) is too far for me to go to on a regular basis.

    Thanks everyone!!

    Kitty!

    Just diagnosed w/PFD - Oh Boy!

    What I have tried: Elmiron, Lyrica, ,Methadone, Vicodin, Norco, Cystoprotek, imipramine, xanax, hydroxizine, trazadone, a bunch of anti-spasmotics and more I'm sure I can't remember.

    What I'm presently on:
    Noritriptyline 25 mg
    OxyContin 20 mg AM - 10 mg afternoon - 20 mg PM
    Zanaflex 2 mg at bedtime
    Percocet PRN for breakthrough
    Zyrtec
    Nasonex (allergies)
    Jolessa (b.c.)
    Physical Therapy 2x weekly

    Be my buddy?

    http://www.facebook.com/home.php?#/p...88&ref=profile

  • #2
    re

    I quit the Elmiron after about 3 months due to the hair loss.

    I have been off it for 7 weeks now.
    I am having much luck with Elavil & Desertharverst.com Aloe Vera

    My IC is mainly frequency & burning. So I know it helps with that.

    If you have alot of pain..I can't say for sure if it would help or not.
    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


    • #3
      HI! Try using the Desert Harvest Aloe Vera. You can order it thru this site. I've used other brands but Desert Harvest is the best for the buck. I take 1 pill 3 times a day and it works great for me for coating the bladder and rebuilding. I also take Elmiron in conjunction with the Aloe and never had any problem with it. Sorry to hear you think it's causing stomach problems and weight problems. I've never heard of that side effect......have you asked your dr. about it. Are you taking Elavil? It causes weight gain. 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
        Elmiron

        Yes I agree with you on the stomach problems, etc. with Elmiron. I have tried this I think 3 or 4 different times now and I just plain think I need to give up. I get to about 4 months every time and then start having constant stomach problems, gas, more IBS symptoms, and even more headaches (hard to tell with fibro if from fibro or meds). I guess I just plain simply have to give up trying Elmiron as even though I make it to the 4 month mark my IC symptoms don't seem to improve at all during that time.

        Comment


        • #5
          http://icandme.9.forumer.com/index.php?showtopic=4 herbal start with IC


          Treating the Gag layer of the bladder has different possibilities. Some alternatives are of things naturally found in the gag layer. Other alternatives in this category create their own layer that helps to coat the bladder and protect it.
          • 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)


          http://icandme.9.forumer.com/index.p...=ST&f=19&t=217 newbie kit there are some things to do for side effects of elmiron in the newbie kit...such as not take it in the capsule drink it, try a small amount of food (like 2 crackers), and some herbs.

          Also on instills a bit....if you could try learning to do them yourself and try them that way....granted you would need to go to that place at least once or twice to get started but many do instillations themself.
          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


          • #6
            Wow

            Kat..this Is Amazing Info
            Thank You Soo Much
            Im Going To Print It
            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


            • #7
              Cystoprotek

              I am surprised no one has mentioned Algonot's Cystoprotek. Cystoprotek works very much like Elmiron, and the scientist who invented it thinks it is even more effective when taken with Atarax.
              Check out their information on this site and their own website, there is a lot of documented research on Cystoprotek, and it is very interesting reading. Even if it didnt work for IC, it is very good for inflammations of any kind including arthritis.
              Sammi

              Sammi

              Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
              Diagnosis: IC, PFD (both in remission)

              Comment


              • #8
                cystoprek

                i tried to check into the cystroprek..but it seems to be all sold out.
                kind of scary.
                especially..if it was working for me...and i was running out.

                where do you go to get that?
                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


                • #9
                  You might want to try emptying the elmiron capsule into water and taking it that way before you give it up. It's not unusual for people to have a bad reaction to the capsule itself.

                  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


                  • #10
                    Cystoprotek is available in the ICN shop. Another good quercetin blend is CystaQ, which I have had luck with and which is also available on this site.

                    I would think seriously about the home instills; a lot of us do them, and I know that I do get a lot of benefit from mine. In fact my husband usually does them, but I have learned to do them myself just in case.

                    Good luck. Sorry the elmiron did not work for you, but it does not work for the majority of patients, so it's not too surprising. I think Katrina gave you a really great rundown of the possibilities.
                    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                    Wishing you happiness and good health, and all the best out of life.

                    Peace, Carolyn
                    ___________________________________________________

                    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                    On the Beach with IC

                    Comment


                    • #11
                      The Cystoprotek has worked very well for me. I order it from the ICN shop.

                      Comment


                      • #12
                        Does anyone take Elmiron, Desert Harvest aloe vera and Cystoprotek. I take elmiron and just started aloe vera. So far I haven't seen any good results from the elmiron. I have been on it for 5 months. So I started the aloe vera a few days ago, along with elimron. I still suffer from alot of pain. Just needing to find the right meds that could help. Any suggestions would be appreciated.

                        Robin
                        The happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!



                        Meds:
                        IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
                        UC: Asacol

                        Comment


                        • #13
                          HI Robin, My IC dr. said it can take up to 9 mo to a year to see changes in the bladder from Elmiron. Remember it's rebuilding and repairing the mucus lininig of the bladder.......that takes a while since we are continuing to eat the whole time. So give it time. As I said earlier in this thread I take Elmiron and Freeze dried aloe vera and it works great for me.....I think it will for you too......just be patient and stick to the diet. 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


                          • #14
                            Thanks for the encouragement. I just thought by 5 months I should be doing better. I sit here and read what everyone is doing and taking and thinking I should be doing something different. I will continue taking both meds and of course watch my diet. Some days I just need that extra boost to continue even though I still don't feel good.

                            Robin
                            The happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!



                            Meds:
                            IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
                            UC: Asacol

                            Comment


                            • #15
                              I didn't start to feel any difference with Elmiron till just a cpl months ago. I know hard it is to be patient with all we go thru with IC 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

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