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  • Worsening symptoms with Elmiron

    Hello everybody !

    I am writing to you from France - Paris. As IC is not as well known in France as in the US, I would like to ask you a question.
    I suffer from IC since one and a half year. During more than one year, I just suffered during sex intercourse. Nethertheless, I decided to take Elmiron and ... since I take Elmiron (2 months and a half), it is worse : I suffer all the time. Does anyone know if Elmiron can sometimes can worsen bladder pain ? I may also have worsened anyway ...

    Thanks to anyone who has information !

    Kind regards.

    séverine

  • #2
    Bonjour et bienvenue!

    I am not sure about worsening symptoms, I have just heard that Elmiron does not work for everyone. I am lucky because Elmiron helped me very much, but if your symptoms are actually getting worse, I would go to your doctor right away and discuss this.

    Have you tried the IC diet? That might help you as well. Please look through the ICN Patient Handbook .... it is very helpful and has a lot of information.

    Take care,
    Alexa
    My story of healing and hope http://www.ic-network.com/patientstories/alexa.html

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    • #3
      Hello Severine,

      Elmiron can take a long time to work - as long as six months. I wouldn't give up on it until you've taken it at least that long. Also, how much of it are you taking? I have read of urologists who prescribe up to 600 mg per day. Maybe an increase would help you. Good luck and I hope you feel better soon.

      Youngin

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      • #4
        Hi, I would call your doctor just to let him know that you are feeling worse, maybe he will want to try something different or even prescribe additional meds. Even if he says to stick it out longer on this medication, you'll know you are doing the right thing. Hopefully you have a compassionate doctor who will help make you feel better very soon. I would also suggest trying the IC diet that is posted at this website. Take care.

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        • #5
          Thank you all for your answers. Unfortunately, if I ask you all these questions on the ICN, it is because our doctors don't know very much about Elmiron because : it is not yet on the French market !!!!
          You are right, I will stick on it and begin tricyclic antidep. if the pain still worsens !
          Thank you for all your answers and keep in touch !

          Séverine

          Comment


          • #6
            I want to let all folks over the age of 18 that have not tried Elmiron know that Shepherd Center will be doing a research study involving Elmiron. Go to the web site at www.Shepherd.org and to the link for research.

            The direct link to urology research is:
            http://www.Shepherd.org/shepherdhome...cument#Urology

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            • #7
              I have not heard anyone whose IC got worse with Elmiron....even those that got worse on other meds that help others that I have talked too did Elmiron hurt there IC. Yet what I do think is that often when we seek treatment we are already in a process of getting worse and I did get worse on Elmiron during the first three months on it ...not from it...just was getting worse....untill it started to help me around the fourth month. I thought it odd....that I could still get worse when I had alreadt started the medicine...and it made me loose hope that the med would work...but it did.

              HAVE HOPE!!
              Faith, Hope, and Love,
              Katrina


              I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

              IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
              or find me on facebook http://www.facebook.com/kat671?ref=profile
              Be the Miracle! & Pay it Forward!

              [email protected] please contact me...I am here to help!

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              • #8
                my dr. has always said with some patients it could take up to a year for complete results on elmiron. It's been 6 months on 400 mg daily, also take vistaril 100 mg. daily and valium as a bladder relaxer which works really really well, then we've added more along the way. it's very important to speak to your dr., bring him info printed off the computer if needed. Best of luck to you, don't give up because it's trial and error and you don't have to suffer. Don't forget everyone on this board is here to help and share, we all care deeply for our fellow ic'ers. Best of luck to you, warm hugs too!

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                • #9
                  Hi Everyone,

                  Re: Elmiron Study.

                  The same study is starting soon in Victoria, BC, Canada. Contact Veronica Anthony, manager,
                  Can-Med Clinical Research (250) 370-2606 or email [email protected]

                  Dr. Peter Pommerville is the Principal Investigator. He is on the IC Canadian List of urologists interested in IC. He is also my urologist. They have a great staff so if you are interested, give Veronica a call.

                  Taylor

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                  • #10
                    my doctor told me it could take up to a year to notice any diff. but with me it never helped i took it for two years now i just take the dmso treatment in place of the elimron and i can tell the diff. with the dmso.
                    I have heard alot of people have great luck on elimron i hope you do too. grouphug
                    Medicine taken daily or as needed:
                    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                    2. MS.Cotin 100mg 3x daily
                    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                    4. Fentanyl 100 mg Change every 48hrs.
                    5. Gentamicin 80mg install after each rescue treatment
                    5 Leviquin 500mg self start as needed.
                    6. Klonopin 1 or 2 daily as needed.
                    7. Prosed/DS as 1 every 6hrs as needed.





                    I have IC, but IC doesn't have me anymore!

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