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  • #1

    Cystoprotek & remission

    Ive been doing quite well off cystoprotek for the last few months. My symptoms have improved alot if I look at how I was this time last year, although I wouldn't say I was in remission, as I still get the occassional day/ few hours where my bladder is irritated. Can anybody tell me if theyv gone into remission from just taking this supplement? I was wondering whether to ask my dr to try me with an antihistamine as I only take 10mg of store bought allergy tablets. I sometimes think my ic is allergy related as I suffer from hayfever, dust & some pet allergys. Any advice?

    Thanks, hope everybody is feeling better today

    Sarah
    Tags: None
  • #2
    Hi,

    My IC has been more mild lately and I think the Cystoprotek has been very helpful for me. If you look on Amazon under the customer reviews for CP, you'll find a lot of people who feel that it's keeping their IC in check too. If you look under Dr. Theoharides articles (which I'm pretty sure you can find here on the ICN) he talks about taking CP with Atarax. He seems to think this is a good combo to take. I want to say he recommends taking 50 mgs of Atarax? I'll have to go back and look...

    Jill
    "Where there is hope there can be faith. Where there is faith, miracles can occur."

    Comment

    • #3
      Hi jvr, thanks for getting back to me. Now you mention it, I remember reading that article a while ago so I think I will head to the Drs & ask her about a stronger antihistamine. I am glad CP is helping you too. I often speak with a girl here in the UK who has been doing well from this supplement for a number of years. I sometimes get disheartened because I will be doing so well for days/weeks and then my bladder will feel irritated all of a sudden. Then I start to worry that the CP is stopping working. I must say though that (touch wood), since I started taking it, I am yet to have a full blown flare. My flares usually only last a few hours to a couple of days and are pretty managable, as opposed to in the beginning. Im pretty sure I could survive like this if my symptoms stayed this way forever, although it would be nice for them to get even better!

      Hope you continue to feel good!

      Sarah

      Comment

      • #4
        MC2203,

        I was wondering, do you pretty much stick to the IC diet? I was thinking maybe your flares might be due to eating or drinking something that has irritated your bladder.

        Just a thought.

        Glad the CP is working well for you!
        Live Well
        Love Much
        Laugh Often!



        Diagnosed:
        Dec 2005
        Diagnosis:
        IC
        Cysto/Hydro:
        Dec 2005
        Other Conditions:
        Anxiety, Insomnia, Chronic Sinusitis, Bursitis of the hip, Chronic Fatigue Syndrome, PFD, Inflamitory Arthritis of the neck, Allergy to Yeast and Dairy
        Meds for IC:
        Prosed/DS as needed which works much better for me than Pyridium, Prelief, Coffee Tamer, Claritin 5mgs and sodium bicarb as needed.
        Alternative Treatments
        Physical therapy for 8 weeks, Acupuncture (just started).
        Other Meds:
        Skelaxin (as needed)
        Didn't work:
        Detrol LA (didn't help symptoms), Pyridium 200mg isn't working very well anymore.
        Tried:
        Elmiron (Major Dizziness), Hydrodistention (Greatly exacerbated IC symptoms), Urised (hard time breathing), Ditropan (bladder pain the next day), Rescue Instillations - Lidocane, sodium bicarb (all over body rash with itching),

        Comment

        • #5
          Cystoprotek is also available in the ICN Shop.

          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

          • #6
            Yes, I get my cystoprotek from the ic shop already, thanks Donna. Shamay, I mostly stick to the diet. I usually do ok eating most of the foods on the maybe list. Maybe my flare is something I have eaten. Im off to the docs later to make sure it's not a UTI & to enquire about antihistamines. Have printed some info about them from this website to show her. Feeling a little better today, so hopefully it was a flare & it is passing!

            Comment

            • #7
              I take the CP every day but will probably give up on it soon as I have been taking it for a year and am certainly not in remission! Hoping the elmiron puts me there.
              It does have some great stuff for my joints though so maybe its good to take it for that.
              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

              • #8
                Ah, okay.

                Gosh I hope you find out what the cause is and feel better soon!
                Live Well
                Love Much
                Laugh Often!



                Diagnosed:
                Dec 2005
                Diagnosis:
                IC
                Cysto/Hydro:
                Dec 2005
                Other Conditions:
                Anxiety, Insomnia, Chronic Sinusitis, Bursitis of the hip, Chronic Fatigue Syndrome, PFD, Inflamitory Arthritis of the neck, Allergy to Yeast and Dairy
                Meds for IC:
                Prosed/DS as needed which works much better for me than Pyridium, Prelief, Coffee Tamer, Claritin 5mgs and sodium bicarb as needed.
                Alternative Treatments
                Physical therapy for 8 weeks, Acupuncture (just started).
                Other Meds:
                Skelaxin (as needed)
                Didn't work:
                Detrol LA (didn't help symptoms), Pyridium 200mg isn't working very well anymore.
                Tried:
                Elmiron (Major Dizziness), Hydrodistention (Greatly exacerbated IC symptoms), Urised (hard time breathing), Ditropan (bladder pain the next day), Rescue Instillations - Lidocane, sodium bicarb (all over body rash with itching),

                Comment

                • #9
                  My IC is the worst my doctor has ever seen (yeah me - right?) and I was seriously thinking I would be a candidate for bladder removal. I tried everything including Emiron, and, except for Amytriptyline, nothing helped. To me it felt like my IC just kept slowly advancing. Over a year ago, in a desperate attempt to hold onto to life as I know it (and like it), I decided to try the CP. I figured I'd give it a year - same as Elmiron. After about 4 to 6 months, I noticed some minor improvement. Not a reversal really, but maybe more like a halt on the advancing IC. After 6 months I noticed I had more energy - not my normal energy, but more than I had had for quite some time. Today, I am on CP for about a year and a half. At this point, I'm too afraid to come off it for fear of slidding backwards. No, I'm not in remission, I still have IC - pain, bloating, frequency, etc. It's just that I have it at a more managable level. I have hydrodistensions about once a year and that helps greatly for awhile and the CP keeps the IC at a dull roar for the rest of the year. Not my cure - but certainly my crutch. Good luck with finding what works for you. Someday, I just know the answer will be found. In the meantime, blessings to us all!

                  Comment

                  • #10
                    Iwannapaint- thanks so much for sharing. I am so glad you are doing better. I agree, although Im not in remission, the cystoprotek has definitely stopped my ic in it's tracks so I suppose it's a start! Lets hope this continues! I have just started 25mg of Atarax, so hoping this will work also.

                    Take care, Sarah

                    Comment

                    • #11
                      How long?

                      Can anyone tell me how long it took for them to see results from Cystoprotek?

                      Thanks!
                      Maria



                      Current medication: Soul-searching

                      Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




                      Comment

                      • #12
                        I pretty much saw a difference straight away. It kept getting better & I didnt have a flare for 4months. Sadly my IC has flared back up & feels worse. Still no pain as such just more tenderness, discomfort, burning & frequency. Been flaring for 5 weeks now & its not a UTI. So not sure if the Cystoprotek working was a fluke. I will continue taking it anyway...
                        Good luck with it

                        Sarah.x

                        Comment

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