Announcement

Collapse
No announcement yet.

Which supplements from the shop are most helpful to you?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Which supplements from the shop are most helpful to you?

    I was under control for 5 years but am in a major flare now.

  • #2
    Usually when I thought it was a flare it would always end up being a uti. Would have to have several tests before it showed. Was yours negative?

    Comment


    • #3
      Yes they’ve been sending it out for culture every time I go in to the urologist. I had CT contrast in Jan and it has done me in.

      Comment


      • #4
        Have you tried the simple things like baking soda in water (or several Tums)? The best advice I can think of is to do a detailed diary to see if you can identify irritants. Have you changed anything like soap? underwear? vitamins? added any new foods?

        Sometimes a manufacturer will change contents of something that's been IC safe before it was "new & improved" --- and it's no longer IC safe --- so please do continue to read labels.


        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
          Originally posted by ICNDonna View Post
          Have you tried the simple things like baking soda in water (or several Tums)? The best advice I can think of is to do a detailed diary to see if you can identify irritants. Have you changed anything like soap? underwear? vitamins? added any new foods?

          Sometimes a manufacturer will change contents of something that's been IC safe before it was "new & improved" --- and it's no longer IC safe --- so please do continue to read labels.


          Donna
          What’s the recipe for baking soda water. Will it help with a flare induced by medication?

          Comment


          • #6
            I would love to know the answer to this question. I can't seem to find much info on this at all.
            I have had to come off Elmiron due to retinal damage and am desperately looking for supplements that have a similar effect. I must admit that I am rather confused with all the different options in the store here (Cystoprotek, Blader builder, Bladder rest etc..) I would really appreciate some first-hand recommendations as these supplements are expensive and I live in Europe so transport will add to the cost and I need to make sure I am purchasing something of high quality that has a real chance of helping me. I have been off Elmiron for almost 6 weeks and am already flaring :/.

            Comment


            • #7
              I've had IC for at least 10 years, the only thing that has worked for me is D-mannose but I still have to strictly follow the IC diet and my symptomshave got steadily worse over the years. I just came across a study for l'arginine that seemed to have very positive results and helped lower blood pressure too which I also suffer from. I took 1000mg a day for less than a week and started sleeping through the night almost immediately then Christmas day came and I slipped up and had a gin and tonic. I thought I would suffer big time but had absolutely no reaction. Again a few days later I ate a meal with tomato puree in it again no reaction so I've gladly abandoned the IC diet and feel normal again. I'm over the moon. I can't find any references to larginine here. I'm wondering if it has been discussed previously?

              Comment


              • #8
                Originally posted by HRJ View Post
                Yes they’ve been sending it out for culture every time I go in to the urologist. I had CT contrast in Jan and it has done me in.
                Wondering if you got this under control quickly? I had ct contrast about a month ago and didn’t associate it with this flare but it could have been the catalyst!
                how can I reverse this?

                Comment


                • #9
                  Originally posted by Calise View Post
                  I've had IC for at least 10 years, the only thing that has worked for me is D-mannose but I still have to strictly follow the IC diet and my symptomshave got steadily worse over the years. I just came across a study for l'arginine that seemed to have very positive results and helped lower blood pressure too which I also suffer from. I took 1000mg a day for less than a week and started sleeping through the night almost immediately then Christmas day came and I slipped up and had a gin and tonic. I thought I would suffer big time but had absolutely no reaction. Again a few days later I ate a meal with tomato puree in it again no reaction so I've gladly abandoned the IC diet and feel normal again. I'm over the moon. I can't find any references to larginine here. I'm wondering if it has been discussed previously?
                  Are you still doing okay? Too often I learn of ICers who abandon the diet and get away with it for weeks to months --- and the pain returns. Please do be careful.


                  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
                    Hi Donna, absolutely spot on. I had a great Christmas but within a few weeks, oh my, the pain! I'm back on the ic diet, giving the l'argine a miss for the time being and managing my symptoms with d-mannose again. I'm using saw palmetto with uva ursi to help when things are so inflamed that I can't pass urine in any quantity. I've just today started taking ginseng and ginko to see if that helps. Thanks for asking. 🤞

                    Comment


                    • #11
                      I'm really sorry your symptoms are back. You'll want to mark this down as a lesson learned --- hopefully you'll feel better quickly and stay that way.

                      Sending gentle hugs,
                      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

                      Working...
                      X