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Question...How long do IC patients take Elmiron?

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  • Question...How long do IC patients take Elmiron?

    I'm taking Elmiron and am very hopeful it will recoat my bladder lining. However, it is causing my hair to fall out. How long will this last and will I eventually be able to stop taking Elmiron?
    Tilly

  • #2
    Sometimes the hair loss is a temporary thing and stops even though you stay on elmiron.

    Most people continue taking it if it helps --- some are able to reduce dosage, but very few are able to totally stop taking it.

    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
      I noticed hair loss when I first started. This is only the second month I'm taking it and I've noticed the hair loss has gotten less. I don't know how long I'll be on it. It seems to work so as long as it works, I'm staying on it.
      Don't worry too much. They say as soon as you go off it, the hair grows back. Is it coming out in clumps? or do you just notice more in your brush?

      Erin
      [email protected]

      Comment


      • #4
        Thanks for the encouragment I'm newly dx and have been on Elmiron for 2 weeks. I was told it would take a while to notice improvement with IC symtems. My hair is falling out fast and I'm hoping that as my body adjusts to Elmiron my hair loss will slow down or stop. Meanwhile, healing my body is a priority. I'm embarrased about the hair loss -- but this is no time to be vain.

        Question -- does anyone else get exhausted physically? Could being in severe pain at night cause it? My doctor's nurse says this is not a symtem, but I have it a lot. Thanks for listening.
        Tilly

        Comment


        • #5
          Everyone naturally loses some hair. My doctor told me when I started on Elmiron to look at my brush every day for a while to see how much hair I normally lose. Use that as a guide. Hair loss from Elmiron would not occur for 3 - 6 months. And at that time if I noticed an INCREASE in the hair in my brush and/or noticed a thinning spot we would know it was from the Elmiron.

          Comment


          • #6
            If pain is keeping you awake at nights, it's not surprising that you are exhausted. Even if you sleep fairly well, pain causes fatigue.

            Sending healing thoughts,
            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 had some hair lose and it eventually stopped. I still have a full head of hair been on elmiron for 2 1/2 years
              Brat
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment


              • #8
                Hi

                I have been taking Elmiron for the past seven months and haven't noticed any hair loss. I had nausea at the beginning, but just dissolve the capsule in water now. Take it three times a day, although sometimes forget the afternoon dosage. Find it a nuisance to take on empty stomach! Is this essential? My hair is thin to start with, but very slow growing. The only other problem I have noticed is appetite loss during the day...

                Comment


                • #9
                  I've been taking mine with meals...decided to experiment on myself...for me, it doesn't seem to make a difference but maybe I'm the only one...dunno..just thought I would report my results...

                  Love, ICY

                  Comment


                  • #10
                    Thanks for all the replies and helpful imformation. Because I'm newly dx and on Elmiron I have more questions than helpful suggestions.

                    Question???? How long after eating is considered an empty stomach, and if you take it first in the a.m., how long should you wait to eat breakfast?

                    Hungry!
                    Tilly

                    Comment


                    • #11
                      If I remember correctly the script usually says one hour before eating or two hours after. I don't worry about it much anymore. My morning dose is often on an empty stomach and sometimes the nighttime one, but I don't worry too much and it hasn't seemed to make a difference.
                      Kim

                      Diagnosed August 2001

                      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                      *****************************

                      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                      Comment


                      • #12
                        Yep, the directions do say 1 hour before or 2 hours after meals. I take 2 capsules in the morning right away, and 2 at night just before bed, trying to avoid eating before bed.

                        Comment


                        • #13
                          When my uro told me I didn't have to worry about taking Elmiron on an empty stomach, I wanted to hug her! It was driving me nuts and I was living my life around the Elmiron schedule. I haven't taken it on an empty stomach for more than 2 years and it's still working just fine for me. In addition, she told me it didn't matter all that much what hours I took it as long as I took it 3 times a day. It has simplified my life considerably.

                          I'm trying hard not to make IC the focus of my life but taking Elmiron on an empty stomach at certain hours of the day made it almost impossible to focus on much else. The trials they did for Elmiron were done on the empty-stomach schedule everyone's trying to follow, but as far as I know, they never tried it any other way. As long as my way's working, I'm sticking to it!

                          Maybe if you asked your dr., you'd find you didn't have to stick to a special schedule or take it on an empty stomach. Check it out...
                          Kat

                          Comment


                          • #14
                            Hi My uro said the pills could be taken with meals. I often do that and have not found any big difference. If I think of it I take the meds ahead of time as i take neurontin with the Elmiron. But either way has been fine for me. When they tested the drug they used an IV form of the drug, not the capsule form we take. I have been in a remission since July and have been treated for over three years! Happy holidays! Carolyn
                            "If you have the heart of a child, you can always look for the rainbow. " Carolyn

                            Comment


                            • #15
                              Thank goodness I decided to read your messages. I have been trying to take Elmiron on an empty stomach for a year, and certainly did not a lot of the time. The disease is bad enough, but that schedule makes it harder to cope.

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