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  • #1

    Was going great... now seems to have taken a step back

    Hello, I'm a 21 year old male, I've had IC since I was 16, diagnosed when I was 18, been pretty much on just Elmiron since then, and my treatment has been going great until the last few weeks.

    I was on a pretty good diet, drank mostly water, maybe a soda or two a week and didn't have any pain, or pain while urinating. About a month or so ago, I decided I was better, and my specialist took me down to 2 elmiron a day, rather than 2 every 12 hours, so I started drinking lots and lots of soda, and almost no water. I started to have small flare up's about 2 weeks ago, so I started doing just the water, and usually if I have a flare up, lots of water will fix it within a few hours, but it's been going on for 2 weeks now. It's mainly pain in the urethra during urination, and it sticks around for a few minutes, usually if the water doesn't work, I'll take Phenazopyrid and that'll always do the trick, but not so much this go around. And I've been having a new symptom, randomly it feels like my urethra is getting tugged, and when it does, it's pretty painful.

    Does anyone else know a trick around burning urination?
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    • #2
      Does anyone else know a trick around burning urination?
      The only permanent solution for me to the burning is when the flare ends. So I get super-strict on the diet and drink plenty of untreated water to keep my bladder flushed out in hopes of hurrying that "ends" along.

      The Phenazopyrid is one thing I resort to as well in the AZO OTC form. Drinking baking soda in water can help with soothing the bladder and muting the burning too. I use 1/2 teaspoon to a glass and do it twice, while others can do it once, managing to get down 1 teaspoon in the mixture without gagging. The baking soda trick should probably be run by your doctor first if you have sodium restrictions in your diet. These are my two favorite temporary aids to get through the burn but I don't know that they're good to do long-term.

      ....so I started drinking lots and lots of soda, and almost no water
      That sounds like me, -testing my limits! Boy, we pay for that! But at some point I have to consider that I may not simply be in a self-induced food flare. So I'm thinking a call to your doctor might be worthwhile. Perhaps your drop in Elmiron dose might need to be re-considered. Besides, that way you could also rule out the possibility of your having an infection going on should this continue.

      Hopefully you can get back to that good stretch you were in!
      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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        • #3
          It may be that you will need to up your elmiron dose to where it was. Reducing that, along with the sodas, could be your answer. I just hope you feel better quickly.

          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

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            • #4
              Originally posted by VickiB
              The only permanent solution for me to the burning is when the flare ends. So I get super-strict on the diet and drink plenty of untreated water to keep my bladder flushed out in hopes of hurrying that "ends" along.

              The Phenazopyrid is one thing I resort to as well in the AZO OTC form. Drinking baking soda in water can help with soothing the bladder and muting the burning too. I use 1/2 teaspoon to a glass and do it twice, while others can do it once, managing to get down 1 teaspoon in the mixture without gagging. The baking soda trick should probably be run by your doctor first if you have sodium restrictions in your diet. These are my two favorite temporary aids to get through the burn but I don't know that they're good to do long-term.


              That sounds like me, -testing my limits! Boy, we pay for that! But at some point I have to consider that I may not simply be in a self-induced food flare. So I'm thinking a call to your doctor might be worthwhile. Perhaps your drop in Elmiron dose might need to be re-considered. Besides, that way you could also rule out the possibility of your having an infection going on should this continue.

              Hopefully you can get back to that good stretch you were in!
              Vicki
              I've never heard of the baking soda, but I'll give it a shot, sounds worth while.

              I've been on the lowered dose of Elmiron since October, and I didn't have any issues until early-late December, I'm really thinking that it's either an infection or self induced. The tugging on the urethra (I guess that'd be a muscle spasm?) feeling is completely new to me, and I can't find any information on why that's occurring, or if that's a common symptom that I just finally came down with.

              And yeah, once I started feeling much, much better I decided to just start doing whatever again, haha. I also started drinking some alcohol again for New Years, think that may have a role to play in the problem, as well.

              Thanks for the tips/advice =)

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