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Why Some Patients Don't Respond to Elmiron

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  • I, too, have success with Elmiron. I did not use the "shotgun" approach as others described, but instead added one thing at a time so I would know whether or not something helped or not and there would be no confusion about my results. The first step was carefully following the diet. I started feeling a little better after about 2-3 weeks on the diet and then began the long process of discovering my own personal triggers. I did not begin taking Elmiron until 5 1/2 months after beginning the diet. I added nothing else and changed nothing for almost a year after beginning Elmiron. I first noticed significant improvement at about 3 months into taking Elmiron, but it took a full 9 months of taking it before I felt the full benefits. It helps me a great deal. Though I had clear benefits from Elmiron, after a year on it I still had some minor discomfort so I added Elavil. That took care of the remainder of my symptoms and I was feeling great. Because I had to have surgery (3 1/2 years after starting Elmiron), I stopped the Elmiron for a period of time before and after my procedure. I was glad when I could safely resume taking it as I was beginning to experience an increase in symptoms. Because I tested one med and treatment at a time and waited quite awhile before trying another med or treatment, I know there is no doubt or question that Elmiron helps me tremendously.

    It is truly unfortunate we all don't respond well to the same meds or treatments. If so, treatment would be SO MUCH easier and each of us would not have to go through the trial and error process! There are certainly those who absolutely cannot tolerate Elmiron. For those of us who do have success with this medication, it is a God-send. I am so glad I gave it a try and stuck with it LONG ENOUGH to discover, without a doubt, how very much it helps me. Each of us, guided by our doctors, must make our own decision about whether or not it is right for us to give Elmiron a try.
    Annie

    IC
    Ulcerative Colitis and IBS
    Pelvic Floor Dysfunction

    _________________________________________________________
    Retirement is great! Work is highly overrated!!!
    ---My dear hubby

    ________________________________________________________
    Never go to a doctor whose office plants are dead.
    ---Unknown

    Comment


    • Elmiron

      I have been living with IC disorder for 15 years. Elmiron was only working for me in my first few year of IC. I woke up at least 5 to 7 times at night to empty my bladder. It is very tough for me to keep my full time job during the day because of lacking sleep at night.
      I have been trying Pelvic physical therapy, Acupuncture...etc but none of these treatments seemed to work for my bladder after living 15 years on it.
      I just went to see my Urology doctor recently and he suggested I should have another cystoscopy even though I do not want to have this procedure any more.
      I already had multiple times of this procedure in the past years with several doctors. They all said I had IC disorder.
      I don't know what I should try next. Please advice if you know any new treatment for this disease. Thanks,

      Comment


      • Antibiotic therapy

        HI,

        This is not a new therapy but may be one you haven't heard of. This is based on the fact that many have species of bacteria (one of many is possible) that are causing symptoms. If so a lab test will show which antibiotics might be helpful.

        I won't go into a lengthy description here since I have written a fairly comprehensive article after pulling together information that is already on the internet but scattered. It includes a history, description of the diagnosis and treatment, research, and success stories. If you are interested please send me a private message or email me and I will give you the link to the article. I am not a medical professional and this is for information only. But there is information about a lab for extensive testing and a professional who is qualified to treat no matter where you live. Most doctors do not know of this or choose to use it. None of the meds used is new or experimental.

        I am a success story but I have asked 4 other patients to write theirs and included them.

        Martha F ([email protected])

        Comment


        • yes i am interested.

          Comment


          • Elmiron seems to be helping me a bit, although my naturopathic supplement helps me more. Interestingly, I always take my Elmiron with milk. I've always taken any pills with milk to keep my stomach from being irritated unless the prescription says not to take with dairy. Maybe you're on to something here. The milk helps the Elmiron get to where it needs to go?!?!?

            Comment


            • Tampa bay urologist

              Who is the urologist that was helpful in Tampa Bay?

              Thanks, Karen

              Comment


              • Sad

                I have just been taking Elmiron since January and was really excited when I was approved for financial aid..it's kind of depressing to hear that it might not really be the miracle drug it's (sometimes) made out to be. I wonder what will come next.
                37mg Eavil each night
                300 Elmiron a day
                Hydrocodiene and Pyridium as needed

                Comment


                • Side effects to Elmiron

                  I'm suppose to start taking Elmiron for 6 months but my question is has
                  anyone had hair loss? I noticed it's one of the symptoms. I also noticed
                  when I was on vacation visiting family, I didn't have any symptoms.
                  It was only for 4 days and it was stressful flying across country but I
                  felt much better than I do at home. If I'm on my feet to long (I stand at
                  my job for hours) my symptoms get worse.
                  Any ideas?
                  Nan

                  Comment


                  • Re: Why Some Patients Don't Respond to Elmiron

                    About 5 years ago I was seeing a uro who gave me Helparin instills. I was doing very well and then it stopped working. I now see a differnent uro and he likes Elmiron. I get instils once a week
                    have not seen an improvement. he agreed to continue for a few more times. I don't know what else he will suggest. I read that there are other meds. I take Norco for pain - 5-325. Not very strong, but better than nothing.

                    Comment


                    • Re: Why Some Patients Don't Respond to Elmiron

                      Originally posted by Sharyn View Post
                      About 5 years ago I was seeing a uro who gave me Helparin instills. I was doing very well and then it stopped working. I now see a differnent uro and he likes Elmiron. I get instils once a week
                      have not seen an improvement. he agreed to continue for a few more times. I don't know what else he will suggest. I read that there are other meds. I take Norco for pain - 5-325. Not very strong, but better than nothing.
                      I have no idea why this question came to me, as I have not been on this site for many years, but the only things I have ever taken for IC are Cystoprotek and Aloe Vera capsules from Desert Harvest (desertharvest.com). Cystoprotek used to be available at Amazon but isn't anymore. These are the standard alternative treatments for IC that I know about, used by thousands of people. Try them together. Read about them (and about Dr. Theoharides, who created Cystoprotek, and is a leading physician at Tufts Medical School) on this website, and read about aloe vera CAPSULES (not liquid) but ONLY buy from desertharvest.com as they treat the aloe vera to leech it of bad properties. these are great anti-inflammatories. Doctors are not much interested in these alternative treatments. I am not much interested in doctors who aren't interested. GOOD LUCK TO YOU!!! If you try them, they may take a while... I truly hope you respond to them and that they help yoU!

                      Comment


                      • Re: Why Some Patients Don't Respond to Elmiron

                        Elmiron never helped me either! Thanks for posting!

                        Comment


                        • Re: Why Some Patients Don't Respond to Elmiron

                          Originally posted by lizzienewyork View Post
                          I have no idea why this question came to me, as I have not been on this site for many years, but the only things I have ever taken for IC are Cystoprotek and Aloe Vera capsules from Desert Harvest (desertharvest.com). Cystoprotek used to be available at Amazon but isn't anymore. These are the standard alternative treatments for IC that I know about, used by thousands of people. Try them together. Read about them (and about Dr. Theoharides, who created Cystoprotek, and is a leading physician at Tufts Medical School) on this website, and read about aloe vera CAPSULES (not liquid) but ONLY buy from desertharvest.com as they treat the aloe vera to leech it of bad properties. these are great anti-inflammatories. Doctors are not much interested in these alternative treatments. I am not much interested in doctors who aren't interested. GOOD LUCK TO YOU!!! If you try them, they may take a while... I truly hope you respond to them and that they help yoU!
                          The products are also available in the ICN Shop and that helps keep this site up and running for all of us.


                          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


                          • Re: Why Some Patients Don't Respond to Elmiron

                            I have been on Elmiron for a month now for IC. It has not helped my IC and now I'm so fatigued, have joint pain, runmy nose and muscle aches that prevent me from working or socializing. These all have been onset since starting Elmiron. I Emailed my Dr. today to advise him I am stopping Elmiron for 2 weeks to see if that is the culprit. As IF was bad enough without the head to toe aches and pains. So disappointed as I am 39 and pain like this the rest of my life is depressing to say the least.

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