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  • Success with out Elmiron!

    I was wondering if anyone has had success controlling their symptoms without the use of Elmiron and with other Drugs or Alternative Medicine! The reason I ask I was just Diagnosed in April and the only Drug I am taking is Elmiron and I have been taking it for 6 weeks now and my hair is Falling out like crazy and it is already looking thin I have fine on the thin side hair already! I am thinking of quitting it the Doc who presribed me Elmiron thinks this is a stupid reason to stop a potentially beneficial drug but I am so sad and cry and don't want to sound Superficial but i don't want to lose all my hair! Any thouhgts! Thanks

  • #2
    I am one of many who have managed their symptoms without the use of Elmiron. There are many treatment options out there.

    Others may feel differently, but if it were me, I'd consider hair loss an unacceptable side effect.

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    • #3
      I've heard...

      I've heard that, for some, the side effects go away with time. I'm not sure how long you're willing to wait and see or how bad it is.

      Thinking of you.

      Maria



      Current medication: Soul-searching

      Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.




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      • #4
        There are many treatment options available --- I had side effects and had to stop taking it and I'm doing fine.

        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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        • #5
          Thank yo so much for the Reply's. I have decided today I am not moving forward with Elmiron and trying other things! I went to the hairdresser today and she said I don't want to hurt you feelings but your hair is falling out like crazy in the shampoo bowl! I started to cry I could not control myself and was Embarrassed.

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          • #6
            I couldn't take Elmiron because it made my IC worse. Thanks to the treatment plan in my signature, I work fulltime, exercise, travel, have a pretty good quality of life. My IC is pretty severe without treatment, but with the treatments listed below, it's managed.
            Kadi

            -------------------------------------------------------------
            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.
            ------------------------------------------------------


            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest
            "


            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!

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            • #7
              I'm also one who didn't take Elmiron, and so far am doing well. I had been taking Benadryl, prelief, Surmontyl, Quercitin, and Hyaluronic Acid along with diet, epsom salts baths, ice packs and moist heat. I'm now only taking the Quercitin, using prelief and watching my diet. I haven't needed the other meds for a good while and am currently without symptoms.

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              • #8
                I also dont take elmiron. I started cystoprotek and it works better for me. It has less side effects. You might want to consider trying that if your afraid of going without elmiron. When I was first diagnosed I took my elmiron for about a year and it didnt help so for about 2 years I didnt take anything at all for my IC.
                Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

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                • #9
                  Originally posted by Renate View Post
                  Thank yo so much for the Reply's. I have decided today I am not moving forward with Elmiron and trying other things! I went to the hairdresser today and she said I don't want to hurt you feelings but your hair is falling out like crazy in the shampoo bowl! I started to cry I could not control myself and was Embarrassed.
                  The good news is that it should grow back. I am on Elmiron and have had no side effects, but some do and it's your body, so you need to decide how comfortable you are with the drug. There are alternatives.

                  As a side note, I love all of these doctors who say the hair loss is no big deal and that it's not a reason to stop taking Elmiron. Isn't there a multi-million dollar industry devoted to helping men restore lost hair?? I don't think they think it's no big deal!!

                  I do know a woman in my IC group who opted to just cut her hair short when she started losing it due to Elmiron, and the hair loss did stop after she had been on it for a while. But that was her choice; we all see thses things differently.
                  Lori

                  40 y.o. mom, wife and marketing manager

                  "Il faut manger pour vivre, et non pas vivre pour manger." -- Moliere ("One should eat to live, not live to eat.")

                  IC symptoms began Feb 2010; diagnosed Mar 2010

                  Treatments:

                  Oral
                  Elmiron 3x day; Elavil 25 mg/day; Prelief (when I remember!); Benadryl and Prosed DS as needed for flares

                  Other
                  Acupuncture 2x/month; yoga; IC Diet; meditation and breathing exercises for stress; heating pad for flares

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                  • #10
                    I have had no problems whatsoever from the Elmiron. I normally dislike intensely taking perscription drugs, particulary ones that need to be taken on a long term basis. I decided to try Elmiron because nothing else I tried helped, and I tried lots of other things, including aloe vera. The aloe vera was way more expensive because insurance didn't cover any of it. The other people in my local IC support group though it made them much less food sensitive. That is certainly true for me, but it took a long time to gradually get better. I know now I should have taken Elmiron immediatly after diagnosis. My Urogyno, who is very open to alternative treatments and doesn't seem like a pill pusher type Dr. has said he has only seen hair loss twice at the most. No change in hair for me or anyone else I've ever meet on Elmiron. (PS My hair is overly thick now, but it has always been that way.)

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