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  • Big flare while on Elmiron

    Hi all!
    I have been on Comfora(generic Elmiron)100mg three times a day since february 2015 .By the end of 2015 I was in remission and I have just had some very ,very occasional flares along the last three years (maybe I flared once every year )and most of the times they lasted two or three days so I considered myself in remission.I have wrotten many times here telling how well I was .
    The last five months I have just been taking like 1 or 2 pills of Elmiron (Comfora) and I am not sure if that is the reason why I have been flaring for more than a month.
    All started a month ago with a stomach upset, then my vagina also felt uncomfortable like itchy (I had a vaginal ezczma years ago so It could be that It had been reactivated) and finally my bladder started being irritated again after years and year very weel.Of course as soon as symptoms came back à month ago I started again my usual dose of Elmiron and even tried to up it to 400mg per day I also took some drops of tramadol that usually help me when I am in a flare .I was so desesperated that I took two fluconazol thinking it could bé candida(I have had candida in the past ) Then I déveloped a gastritis probably for so many pills and I was unabel to control it. Two weeks ago I started feeling better in my bladder department ,but the gastritis was still very bad so I stopped all my meds for two days including the Elmiron. After two days off of my meds my stomach started being O.K.but my blader started flaring again .It has been a month and I am really down.Has anybody here experienced flares as a result of lowering their Elmiron?How long until you were again O.K.?I think having to stop the Elmiron two weeks ago for the gastritis has made me go back as I was a bit better before stopping those two days .Any experience lowering Elmiron and going backwards ?
    Can you give me any advice?
    Thanks in advance
    Last edited by monic433; 05-27-2019, 01:49 AM.
    IC diagnosed by symptoms at the end of september 2011.
    Other conditions:Asthma (controled since 13 years old )

    PAST IC symptoms :frequency, urgency , bladder pressure and lately pain around the pubic area which increases when my frequency is lower.

    Past treatments: DMSO instills, rescue instills at home, MSM, Atarax , DETROL.,lorezapam, phisical therapy, cystistat instills and natural suplements under my ND attendance.

    First remission from november 2012 - august 2013 (what helped me most was my ND treatment as I got rid off intestinal candida that was the main culprint of my symptoms My remission ended with a UTI that was not detected on time and damaged my bladder again.

    Since augst 2013 till march 2015 I tried again cystistat instills (did not work this time, more natural suplements and even a long term antibiotic therapy .This last one antibiotic therapy only damaged me more.

    Since march 2015 till today taking elmiron and natural suplements and I am feeling really well latelly Hope to be in remission soon.In remission since november 2015. I wish it last forever.

  • #2
    I couldn't take Elmiron, but I have seen posts from ICers who find a medication routine that helps them to feel normal, or close to normal, then stop or alter the treatment routine and find themselves back where they were before treatment. Yes, some folks can get away with stopping treatment, but it sounds like you may be one who will need to stick with it --- even when you feel good. I hope you'll be out of this flare quickly.


    Donna
    Stay safe


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    • #3
      Hi Donna!
      Thanks for your quick answer.I also think I am one of those that must remain with my treatment.I was just trying to know if I could stay in à lower dose .I think sometimes It is trial and error and mine was an error.
      I Hope other people here Who have had the same expérience can give me a bit of hoppe that in a reasonable time I Will be ok again.
      Best wishes Donna.
      IC diagnosed by symptoms at the end of september 2011.
      Other conditions:Asthma (controled since 13 years old )

      PAST IC symptoms :frequency, urgency , bladder pressure and lately pain around the pubic area which increases when my frequency is lower.

      Past treatments: DMSO instills, rescue instills at home, MSM, Atarax , DETROL.,lorezapam, phisical therapy, cystistat instills and natural suplements under my ND attendance.

      First remission from november 2012 - august 2013 (what helped me most was my ND treatment as I got rid off intestinal candida that was the main culprint of my symptoms My remission ended with a UTI that was not detected on time and damaged my bladder again.

      Since augst 2013 till march 2015 I tried again cystistat instills (did not work this time, more natural suplements and even a long term antibiotic therapy .This last one antibiotic therapy only damaged me more.

      Since march 2015 till today taking elmiron and natural suplements and I am feeling really well latelly Hope to be in remission soon.In remission since november 2015. I wish it last forever.

      Comment


      • #4
        ME! I have tried many times to wean off or lower my dose and always end up in a massive flare. I need to be on 3 pills a day. When I do flare I up it to 4 pills a day for a few months. Hate this disease!!

        Comment


        • #5
          Hi Melinda!
          Thanks for your answer I have read some of your post about going out off remission while on Elmiron.How do you feel betwen flares ? Do you feel 100%? I was feeling perfect the past three years, eating and drinking what I wanted.My only problem used to be intercourse that still was a problem some times
          .I am a bit better this week so hopefully by next week I Will be doing well again.🌬🌬😘
          IC diagnosed by symptoms at the end of september 2011.
          Other conditions:Asthma (controled since 13 years old )

          PAST IC symptoms :frequency, urgency , bladder pressure and lately pain around the pubic area which increases when my frequency is lower.

          Past treatments: DMSO instills, rescue instills at home, MSM, Atarax , DETROL.,lorezapam, phisical therapy, cystistat instills and natural suplements under my ND attendance.

          First remission from november 2012 - august 2013 (what helped me most was my ND treatment as I got rid off intestinal candida that was the main culprint of my symptoms My remission ended with a UTI that was not detected on time and damaged my bladder again.

          Since augst 2013 till march 2015 I tried again cystistat instills (did not work this time, more natural suplements and even a long term antibiotic therapy .This last one antibiotic therapy only damaged me more.

          Since march 2015 till today taking elmiron and natural suplements and I am feeling really well latelly Hope to be in remission soon.In remission since november 2015. I wish it last forever.

          Comment


          • #6
            I had a flareup last February. Usually when I have a flare up it lasts a good six months unfortunately. Prior to that for 3 years I feel like I had been in a medical remission, eating and drinking pretty much everything but always taking my prelief and medication. Since The flareup last February I finally felt like I was getting better towards the summertime but I didn’t completely feel 100%. Now with this latest flare I’m March I back to square 1!! I had reduced my dosage in August to three pills a day from four. Since my flare up in March the last month I have been on 4 pills a day, two in the morning in and 2 at night. I had been feeling better, not in remission, but my bladder was feeling much better. I stupidly had a few vodka and sprite drinks over memorial day weekend and my bladder burned all day yesterday! It felt better this morning but now again it is burning. So mad at myself! I did also go for a series of six bladder installations, once a week for six weeks. I was supposed to go in last week because it had been two weeks but my normal PS who does it was out last week. I do have one scheduled for Thursday this week. For some reason my bladder takes a really long time to heal from a flareup. So frustrating! I really wish they had better treatment for this disease.

            Comment


            • #7
              Hi Melinda!
              I am feeling well today and hopefully will feel better from now on. I have resumed my old diet which is not a traditional IC diet, it is more like a paleo diet and I think it is the best for me. I had indulged to much lately to the point that I think this last flare has been a good alarm of my body calling my attention. Another thing is that I think my remission is due not only to elmiron , I definitely changed my life some years ago:
              Firstly I started meditating every day for an hour: I did guided meditation for three years and it really helped me .I have already come back to meditate since this last flare .
              I also worked with a naturopath that helped me to detox, get rid of candida and achieve a good state of health .On the other hand , I tried to find some really good hobbies that I can do and put all my attention and my hoppe in them :I climb every weekend and every time I have a moment to do it (having my atention in doing a route and not falling is my best therapy to forget my bladder ) and I also started playing in a group of theatre four years ago I think we dedicate too much time to think how we feel when what we need is probably absolutely the contrary. If I were you I would try to find things that make you happy and forget this , I mean, come to this forum only from time to time and read only the positive stories , I think that will help you to get your remission again. This is just what worked for me and I wanted to share it with you because I think you deserve a new remisison and I am sure you will get it again soon.
              My best wishes to all of you.
              IC diagnosed by symptoms at the end of september 2011.
              Other conditions:Asthma (controled since 13 years old )

              PAST IC symptoms :frequency, urgency , bladder pressure and lately pain around the pubic area which increases when my frequency is lower.

              Past treatments: DMSO instills, rescue instills at home, MSM, Atarax , DETROL.,lorezapam, phisical therapy, cystistat instills and natural suplements under my ND attendance.

              First remission from november 2012 - august 2013 (what helped me most was my ND treatment as I got rid off intestinal candida that was the main culprint of my symptoms My remission ended with a UTI that was not detected on time and damaged my bladder again.

              Since augst 2013 till march 2015 I tried again cystistat instills (did not work this time, more natural suplements and even a long term antibiotic therapy .This last one antibiotic therapy only damaged me more.

              Since march 2015 till today taking elmiron and natural suplements and I am feeling really well latelly Hope to be in remission soon.In remission since november 2015. I wish it last forever.

              Comment


              • #8
                Glad you are feeling better! I, too, saw a naturopath years ago before my last 3 year remission. I am back to seeing him. He mostly does acupuncture and craniosacral therapy (pressure points on my head). I think he is afraid to prescribe any supplements because my bladder is in such a touchy state right now. I also have cleaned up my diet and was following the AIP diet for 3 weeks which is tough. I am following it still but added a bit of dairy back (mozzarella cheese). Had to go in for a rescue installation today because my flare just got worse! They detected an increase of white blood cells so they started me on macrobid and sent it to culture. Chances are it’s just a bad flare but I had some bladder spasms which is unusual. Hopefully I am on the right track now!

                Comment


                • #9
                  Hi Melinda!
                  How are you these days? Did you notice a change in symptoms after taking the macrobid? I had some good days last week and then on Friday I got the results of a test they did on 16may (it is an annual checking that we get through our company and they usually do not send the results until a month latter😔 ) and it says that I have some spare bacteria, some blood count 5-10 but not nitrites nor leucocites. They did not culture it as it is just a simple check and they would never culture it even though they had found a miilion of bacteria.
                  I do not know if it is because I am now worried that it can be that low count bacteria or a slight UTI and not dropping my elmiron what has happened and it has damaged my bladder but I am feeling worse since knowing that my urine had some bacteria. I am going to my doctor tomorrow and will ask for a new urine analysis as I got one in the ER a month and a half ago when this flare started and there was just some blood but nothing else( It was not a concentrated urine though as they just took the sample when I arrived at hospital and I had urinated an hour before.) I want to have my urine checked with the first urine in the morning because I know that is the only way to know if I have an infection or not. I am not prone to UTIS and in fact I have only had some spare bacteria in urine in the past when they have checked it while having a candida flare. I have ordered DManosse and will start taking it as soon as I get it as even though it is not a high UTI I think it can help me.
                  My stress levels are high these days as I hoped by now I would be better after having already resumed my usual elmiron dosage a month and a half ago.
                  I hope it was an infection for you and you are feeling much better now.
                  Last edited by monic433; 06-09-2019, 01:17 PM.
                  IC diagnosed by symptoms at the end of september 2011.
                  Other conditions:Asthma (controled since 13 years old )

                  PAST IC symptoms :frequency, urgency , bladder pressure and lately pain around the pubic area which increases when my frequency is lower.

                  Past treatments: DMSO instills, rescue instills at home, MSM, Atarax , DETROL.,lorezapam, phisical therapy, cystistat instills and natural suplements under my ND attendance.

                  First remission from november 2012 - august 2013 (what helped me most was my ND treatment as I got rid off intestinal candida that was the main culprint of my symptoms My remission ended with a UTI that was not detected on time and damaged my bladder again.

                  Since augst 2013 till march 2015 I tried again cystistat instills (did not work this time, more natural suplements and even a long term antibiotic therapy .This last one antibiotic therapy only damaged me more.

                  Since march 2015 till today taking elmiron and natural suplements and I am feeling really well latelly Hope to be in remission soon.In remission since november 2015. I wish it last forever.

                  Comment

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