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Flare after 11 years, Elmiron and Amitriptyline

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  • Flare after 11 years, Elmiron and Amitriptyline

    It’s been a long time since I’ve posted, but I have a need to share my situation. I’ve had IC since 2009, been on Elmiron the entire time. For the last week I’ve been in a flare just like I had back in the beginning. No idea where it came from but I suspect it is dietary related. Now, since my diagnosis I’ve been very consistent with diet, excercise and meds. Feel good most of the time, know what to stay away from. I drink low acid Kava or Puroast coffee in the morning, with Pero and prelief. For the past several months I tried mayo on tuna and recently tried a smidge of vinegar with olive oil on my salad. I tolerated both well. I only eat these things every couple of weeks. Since I was furloughed in March I drank more Puroast, with less Pero. I think that may have caused the flare. Today I went for my annual uro appt. and the doc said to stop taking Elmiron. He wants me to try amitriptyline for pain. I am very hesitant to try it because of potential side effects. I am worried about discontinuing Elmiron, but also plan to ask my eye doc about the possible eye issues. I know that meds affect people differently so the new script may not cause me too many problems. It’s scary to drop one med and try a new one. I actually feel better today- no coffee in 3 days. I just wanted to vent a little and know I am not alone in this fight. I thought I was possibly headed toward remission but my bladder said “oh no you ain’t!”





    Pat

  • #2
    My husband took 10 mg of amitriptyline for years for arthritis pain. Our doctor explained that it interfered with the pain receptors in the nerve system. It might be worth trying. The eye side effect of elmiron is a fairly recent thing and I think it's a result of taking it for a long time. Losing eyesight is a significant loss --- I suggest you try some other alternatives to see if you can find relief without it.

    These are very trying times and I know my own stress level is high right now and I'm fighting with a flare right now too. If I could just go somewhere fun without worry I think it would help resolve my stress.

    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


    • #3
      Hi Pat,

      Two things come to mind - (1) Elmiron acts as a bladder coating. So, it only makes sense to transition to another product that has a similar coating effect. Most patients stopping Elmiron transition to one of the chondroitin based supplements, such as Bladder Builder, Bladder Rest or Cystoprotek. You can find those in our store: http://www.icnsales.com

      (2) It's not uncommon for a woman, as she ages, to experience dryness and estrogen that will inadvertently also effect the bladder wall. This is known as the Genito-urinary syndrome of menopause. That may be why your bladder has gotten more sensitive. It would be worth talking with your MD about this to see if you have the tell tale signs of estrogen atrophy that we all, sadly, go through. And, with estrogen atrophy, patients will be less able to tolerate something like Puroast. You could, of course, try some Prelief with it to reduce any residual acids as well.

      Jill
      Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

      Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

      Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






      Comment


      • #4
        Thank you Jill. I do have vaginal atrophy, which has similar symptoms to IC. I plan to try one of the recommended supplements before trying the Amitriptyline. 😊 Hope to post a success story soon!
        Pat

        Comment


        • #5
          Thank you Donna. Having fun sounds like a good antidote to all this stress.
          Pat

          Comment


          • #6
            I should have mentioned earlier --- I am currently taking Bladder Rest and it's helping. When I ordered it, I just did an eenie-meenie-minee-mo and it seems to be working. I had it in my refrigerator for quite a while before I was brave enough to try it.

            Good luck!

            and You're welcome.

            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


            • #7
              I got the ok from my urologist to try an OTC supplement but he wisely suggested that I check all the ingredients in the pills to make sure there would be no adverse reactions with other meds I take. So I spent a chunk of the day looking up ingredients in bladder rest and a few others and I’m hesitant to try any of them. I get very leery and anxious when trying a new medicine, even if it’s OTC. One reason I didn’t want to take the Amitriptyline was a list of possible side effects. So now I am unsure of what to do. I try not to read too much into reviews because everyone reacts differently to medication, but I can’t help the “what if” scenario. Ugh.
              Pat

              Comment


              • #8
                Originally posted by GPat View Post
                I got the ok from my urologist to try an OTC supplement but he wisely suggested that I check all the ingredients in the pills to make sure there would be no adverse reactions with other meds I take. So I spent a chunk of the day looking up ingredients in bladder rest and a few others and I’m hesitant to try any of them. I get very leery and anxious when trying a new medicine, even if it’s OTC. One reason I didn’t want to take the Amitriptyline was a list of possible side effects. So now I am unsure of what to do. I try not to read too much into reviews because everyone reacts differently to medication, but I can’t help the “what if” scenario. Ugh.
                What was the dose of amitriptyline that was ordered? Even though my husband took it without a problem, I had a severe side effect --- my blood pressure shot up to over 200. The good news is that the side effect disappeared in less than 24 hours.

                I hope you feel better soon.

                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


                • #9
                  I’m not sure what the dose was because I did not fill the script, although I did ask him to prescribe a low dose. I’m struggling to understand why after more than a decade with my IC under good control that literally overnight the problems came back just like in the beginning, I’ve recently started taking vitamin E for breast pain, but can’t find a connection to this flare. I’m angry, stressed and frustrated. Thank you for your support. I may try the bladder rest.
                  Pat

                  Comment


                  • #10
                    Donna, I forgot to ask, but are you currently taking Amitriptyline?
                    Pat

                    Comment


                    • #11
                      No. I couldn't take it. I tried it and it did a "reverse" on me --- my blood pressure shot up to over 200 on the top reading --- I called my doctor and he said to stop it immediately. When asked about it, I don't like to emphasize the negative and my husband took it for years with no problem --- and my reaction was not common (according to my doctor). I don't want to discourage anyone from trying it. My blood pressure was normal the following morning so the reaction lasted less than 24 hours. I would try it again under the same circumstances.
                      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


                      • #12
                        Originally posted by ICNDonna View Post
                        I should have mentioned earlier --- I am currently taking Bladder Rest and it's helping. When I ordered it, I just did an eenie-meenie-minee-mo and it seems to be working. I had it in my refrigerator for quite a while before I was brave enough to try it.

                        Good luck!

                        and You're welcome.

                        Donna
                        how long did you take it before you noticed a difference?

                        Comment


                        • #13
                          I don't even take it full time --- it only took, at the most, three days before I could feel a difference.

                          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

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