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  • #16
    Re: Accutane

    I have been battling bladder issues for years. I took Accutane when I first started college and it took years to finally get diagnosed with Interstitial Cystitis. I am miserable almost every day of my life. The pain, the frequent urination. I never want to leave the house because what if there isn't a bathroom? My Dr put me on Elmiron and it made my joints hurt so bad, that one day I couldn't even walk I take uribel to help with the burning and frequency but the last few flare ups have been unbearable. I am going to my dr again on the 26th to hopefully try other options. Bladder stretching? Botox in the bladder? I'm at a loss and have become depressed because of this.
    I am with you on reporting to the FDA.
    Email me at [email protected]
    We should not have to suffer.
    Angela.

    Originally posted by MissM View Post
    Hello,

    I know this is a REALLY old thread but I took Accutane this year and have developed IC as well. The reason I am even trying to respond to such an old thread is I am wondering if you all reported these symptoms to the FDA? I am currently reporting this to the FDA and hoping if enough people out there do it will be reported to the drug manufacturers and other poor people will be warned against this horrific drug!

    Generic name is: Isotretinoin (goes under names: Absorica, Claravis)

    If you have any question let me know, I am dead set on fighting this. Perhaps even a class action lawsuit could happen if enough people report this.

    Thank you,

    Maryanne

    Comment


    • #17
      I have similar story and a very severe case of IC. I was bed ridden for years and have been disabled for years. My IC started in 1994, the year I graduated high school. I was prescribed the higher dose due to one stubborn cyst which eventually had to be surgically removed. It took 12 years to get a correct diagnosis, historically it’s way under diagnosed according to that doc. The doc said the lining of my bladder was “cracked and bloody”.

      I think Accutane also damaged my immune response and my soft tissues, I have autoimmune issues now and degenerative disc disease since my late 30s. I’ve understood for years that Accutane dries out the entire body, especially mucous membranes including bladder lining. It’s similar to how Accutane caused Crohn’s disease, which damaged the lining of the intestine for many, and the manufacturer settled out of court.

      It’s so sad to read how many of our lives have been ruined by this drug originally developed for cancer. It’s too bad we don’t have legal recourse, those of us who were injured by it deserve help. It’s difficult to survive or have any quality of life when in severe chronic pain which causes chronic sleep deprivation for 26 years. I wish I had been well enough to find this group earlier. Is there any attorney working on this? It almost seems like there could be another class action for IC.
      Last edited by Wilis; 12-09-2020, 06:01 PM.

      Comment


      • #18
        Originally posted by Wilis View Post
        I have similar story and a very severe case of IC. I was bed ridden for years and have been disabled for years. My IC started in 1994, the year I graduated high school. I was prescribed the higher dose due to one stubborn cyst which eventually had to be surgically removed. It took 12 years to get a correct diagnosis, historically it’s way under diagnosed according to that doc. The doc said the lining of my bladder was “cracked and bloody”.

        I think Accutane also damaged my immune response and my soft tissues, I have autoimmune issues now and degenerative disc disease since my late 30s. I’ve understood for years that Accutane dries out the entire body, especially mucous membranes including bladder lining. It’s similar to how Accutane caused Crohn’s disease, which damaged the lining of the intestine for many, and the manufacturer settled out of court.

        It’s so sad to read how many of our lives have been ruined by this drug originally developed for cancer. It’s too bad we don’t have legal recourse, those of us who were injured by it deserve help. It’s difficult to survive or have any quality of life when in severe chronic pain which causes chronic sleep deprivation for 26 years. I wish I had been well enough to find this group earlier. Is there any attorney working on this? It almost seems like there could be another class action for IC.
        I'm so sorry you are another who has severe problems after taking accutane. If you have an attorney, he/she can probably check to see if there are any class actions related to 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


        • #19
          Hi Donna, thank you for your kind words. I do not have an attorney. When I called the Accutane class action number in 2009 they said IC was not included, also IBS was not included. Then, a year later they added IBS but when I called they said it was too late. I was too sick to navigate that stuff in time. I wonder if anyone here or elsewhere has found an attorney who has been successful against Accutane causing interstitial cystitis or that might consider my case?

          Comment


          • #20
            Originally posted by Wilis View Post
            Hi Donna, thank you for your kind words. I do not have an attorney. When I called the Accutane class action number in 2009 they said IC was not included, also IBS was not included. Then, a year later they added IBS but when I called they said it was too late. I was too sick to navigate that stuff in time. I wonder if anyone here or elsewhere has found an attorney who has been successful against Accutane causing interstitial cystitis or that might consider my case?
            You might want to check to see if there's a support site for folks with Accutane problems --- there might be someone there who can suggest how to find an attorney.

            Good luck!
            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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