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Interstitial Cystitis (IC) Message Board

  • I.C and Elmiron

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    Old 10-07-2019, 03:42 PM   #1
    djl
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    I.C and Elmiron

    Hi everyone
    I was diagnosed in May or June I believe with I.C via a cystoscope done by my Gynecologist. I sometimes urinate Blood. He also said I have Hunners Ulcers.
    He discussed putting me on allot of Vitamins and Supplements which I am taking. He also mentioned Elmiron but before I started that drug I wanted to see how the Vitamins and Supplements worked.
    Since I believe June I have had 3 bouts of urinating blood. So last week he told me he wants me on the Elmiron and in 2 weeks I need another Cystoscope done.

    Has anyone been on this drug and dealt with side effects?

    I also scheduled a appointment with a Urologist because my grandfather had Bladder Cancer and needles to say that is concerning to me. I can’t get in to the Urologist until Dec 9th.

    Anyone have any feedback?
    Thanks and hope all is feeling well

    Debra

    Last edited by Administrator; 10-07-2019 at 07:22 PM.

     
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    Old 10-07-2019, 04:56 PM   #2
    Melissaadore
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    Re: I.C and Elmiron

    Hello dear. I also have IC and itís absolutely debilitating so I feel for you. My urologist wouldnít prescribe elmiron. She says from her experience it hasnít worked for her patients and itís extremely expensive. When i was first diagnosed she gave me urogesic blue instead.
    She didnít recommend any vitamins or supplements to me. My question to you is why arenít you working with a urologist instead to begin with ? They are the ones who do the cystoscope. I wasnít even aware a Gyno would do them. But a cystoscope can rule out bladder cancer so thatís why I asking also. Hunners ulcers are terrible. I also have them. Youíll probably always have blood on your urine whether you can see it or not. I was diagnosed in Jan of 2018 and all my urine cultures still have blood in them. Sigh.

     
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    Old 10-08-2019, 08:32 AM   #3
    djl
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    Re: I.C and Elmiron

    Hi Melissa

    Thank you for your reply.
    Regarding going to a Urologist I really was t thinking about that. When this first happened I figured it was a UTI so called my Gyno. I know my Gyno personally as he has known my husband for years.

    But since this has happened more then once I decided to go and see a Urologist but canít get in until Dec 9th.

    I just started the Elmiron so see what happens with that. My gyno has me on Cystatin, Cranberry with D-mannose 5000mg of Vitamin C a strong Probiotic as well. When I do bleed he sneaks puts me on a Antibiotic and this pill that turns my urine Blue.

    This is not a fun condition to deal with.

    I do believe I have been dealing with it for a few years. Is. I have had bouts in the past years where I would constantly urinate then eventually it would stop but no blood.

    How long have you been dealing with it?
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