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dosage, can it be 600 mg a day, who what why?

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  • #16
    When I started elmiron in October I was on 600mg a day then I went to 300mg, and now I am at 200mg.... I am having my first liver panel done next week. So far the only side effect I had was hairloss in the first 3 weeks, after that it went away. Good luck!
    ~leanne

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    • #17
      Elmiron

      Dear Katrina when I started taking elmiron I was on 600mg and over time my hair started falling out. I then went back to 300mg and it has been working great for me. My doctor told me that once I started taking it I would always have to take it. Im really lucky my husband is on a good insurance plan to pay for it. When I stopped taking it after my hair fell out, what a bad mistake!! When I went for my next treatment I was all inflamed. When I told him my hair started falling out he jokingly said you have more hair than me. It made me laugh a little at myself for quitting and I got back on Elmiron. It took a couple months to get back to where I was before I quit. I know that they were doing a study at higher levels (like 800mg ) but my urologist told me to go down because he felt it did cause hair loss. I really hope things work out for you.

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      • #18
        Well, my new urologist is of the opinion that 600 mg Elmiron per day is fine, and she prescribes it that way (300 mg, once in the a.m. and once at night). She strongly encouraged me to try it that way, and I (a) think she seems very well informed and (b) will try just about anything right now... so despite my reservations about it that I posted earlier in this thread, I have started taking this higher dose. So far I have not noticed any real side effects except for if I bump into the table or something, it causes a slightly bigger bruise now compared to before.

        I've been on the higher dose for a week and a half now; I'll let everyone know what the result is.

        ****
        Jen

        *Diagnosed with severe IC in 2004
        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

        **I am not a medical authority nor do I offer definitive medical advice. 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.

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        • #19
          What is a liver panel? How do you know when you need one? How frequently? Always a little troubled about taking any kind of prescription med. for an extended time.

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          • #20
            I am a male, 185 lbs, and I only take 300 mg. I talked to my doctor about it, and he told me that he would not usually perscribe any more than that.

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            • #21
              In very layperson's terms (b/c I am sure not a doctor LOL) a liver panel is a bloodtest they run to check your liver enzymes. Some docs with patients on Elmiron want it done every 6 months, some once a year. I don't think my doc would have even had me do it if I hadn't brought it up to him. Now I have either my GP or uro prescribe the bloodwork. Which reminds me, I am probably due for that again.......
              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

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              • #22
                Thank you everyone for your replies....Jen I guess you and I will be letting everyong know how it goes! I too have noticed bruises bigger and sticking around longer....no big deal, and if your doc recommends this dose I have higher faith that it will help....right now since my body seems to be thicking worse is the direction to go for all my diseases it is definatly time to fight back with full forse.

                hugs to all
                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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