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  • Cystoprotek-has anyone had success?

    Tried Bladder Q a few years ago, but it didn't make a difference. I would really like to feel better. Has anyone tried cystoprotek and had success or side effects? I would like to get your feedback before sinking more money into false hope. I have pain most days and frequency on the worst days. Thanks for your help. I say a prayer each night for everyone with this relentless illness.

  • #2
    I know a lot of people on here do take the supplements. I personally do not, so I can't off you much help there. I am sure someone will see your post soon and give their input.

    I pray for all of us too,

    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

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    • #3
      Hi,

      I would recommend cystoprotek. Ive been taking it for about 4 months and have definitely seen an improvement in my frequency. I can't comment on pain because I've never experienced it. I still have flares but they are MUCH more manageable. I still also have to watch what I eat but I can stray a little off the diet. I have just started a low dose of atarax and I am hoping that I get more relief with this combination.

      Give it a try, I hope it helps you!

      Sarah

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      • #4
        CystoProtek seems to help me, though it's not been magical enough to let me stray far from the IC diet. However, two years worth of taking Elmiron never allowed for that either.

        When I first started CystoProtek I noticed I was having episodes of erratic heartbeats. I took a two week break from it, the episodes stopped, and when I resumed they never re-appeared. I don't know if it was the CystoProtek or just coincidence. That would be the only possible side-effect I've experienced.

        Vicki
        "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

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        • #5
          I just started it and haven't seen much change (they say it takes a few months) but definitely no side effects.
          \

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          • #6
            I would recommend it.. I started taking it around the beginning of march and have noticed a great difference. I noticed right away that it was helping me. I tried the elmiron and it seems that I was having more frequency. I am about to order my second bottle of cystoprotek. I like it so far. Hope it helps you...
            _____________________________________________

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            • #7
              I started CystoProtek in January 2011 in conjunction with my BCP (December 2010), IC Diet (October 2010), and Elmiron (August 2010).



              I can definitely see improvements since adding the CystoProtek. The company suggests to give it three months before making a decision concerning its effectiveness.


              As for me, I love it!!!

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              • #8
                I started using cystoprotek and my frequency is down to 10-14 during the day and 1-2 at night. Sometimes all night. Elmiron did nothing to help. I started mine in Jan 11.
                Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

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                • #9
                  Cysta Q ?????

                  Has anyone had success with Cysta Q... I see alot more posts on Cystoprotek. I believe it caused me more frequency. I have been on Elmiron 5 months. Still trying to get frequency down. OABs didn't really help either.
                  Thanks for any advice!!

                  Jonathan

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                  • #10
                    I am curious to know where to get Cystoprotek? I wouldnt mine trying it too! Can you get it from a health food store?
                    28 yrs old,

                    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

                    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

                    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



                    Me in my graduation gown!

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                    • #11
                      It's available in the ICN Shop. There's a link to the Shop in my signature below.

                      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

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                      • #12
                        Success

                        Yes, I have been taking CystoProtek for over 3 years, never straying from six capsules a day. I started taking Desert Harvest Aloe Vera at the same time, so my success could be attributed to both supplements.

                        1. I was able to eat chocolate and candy containing citric acids after one year - NO FLARE.

                        2. The severity of my flares has gone down. I still flare from diet mistakes and have to remain dedicated to avoiding irritants. BUT when I do flare, it can be dealt with by one instill and a nap.

                        3. I no longer experience frequency or urgency when I am NOT flaring. I only get those while flaring, and not nearly as serious as before.
                        Exposure to an unclean hot tub 2-17-07 FIRST UTI
                        (Got ringworm-like sores from it before)
                        (Someone else got what looked like 'eye herpes')
                        (My husband got an ear infection. We were all just sitting there!)
                        SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
                        TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
                        Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
                        CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
                        MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
                        PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

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                        • #13
                          I had digestive side effects with cysto-protek. I ordered it through amazon and if you schedule deliveries they give a price break. I couldn't really tell if it helped but I stopped after a few months because of the digestion issues; a big increase in flatulence...I'm going to try cysta-q because I didn't have that issue with it. I haven't heard of anyone else having this side effect so maybe I'm the only one. Good luck!

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                          • #14
                            I'm beginning month 2, and it is definitely making a difference. The pain is reduced, and frequency is down. This is the first thing that has really made a difference. I'm personally not seeing any side effects at all, but YMMV

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                            • #15
                              I just started taking it yesterday, along with my other IC meds. Seems like my frequency is up but I don't know if it's due to the Cystoprotek or something else. Anyone else see an immediate increase in urinary frequency from Cystoprotek?
                              Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

                              Current medications/treatments:
                              Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

                              Previous medications/treatments:
                              Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

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