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

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

    I am thinking of trying new or more treatments to discuss with my doctor..Because ofcourse I want to be all better not just a little better.

    I had success with 300 mg to a point. I do not believe I have suffered any side affects.

    What does it take to qualify for 600 mg and what does it help? Can I get to the point of not having this sensation of having to go all the time?? Who qualifies for this dosage? Has anyone that has had lower dosage and than gone higher noticed new side affects?

    Thank you for all of your help.
    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!

  • #2
    There is differing opinion on this. There are people at this site who are on 600mg a day. The one research study that looked at different dosages of Elmiron concluded that increased amount didn't seem to make a difference. They felt length of time on the drug is what mattered - the longer the better. BUT, some doctors still feel more may be helpful. My doc wouldn't "up it" b/c he worries about liver toxicity.
    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

    Comment


    • #3
      Hi Katrina--

      I don't know much about the 600mg. dosage, I'm on the 400mg. dose. Betsie around the boards here is on that doseage, maybe she'll chime in if she gets a chance. But like Kim said, with the possibility of liver damage, I don't think a lot of uros like to give that dosage out. Hmmm good question. Hope you get your answer.

      Hugs and love,
      Jess
      Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

      Comment


      • #4
        Hi Katrina. I have been on elmiron for about 3 yesrs now. I did 600 mg a day for about 6 months and then I went back to 400. I haven't had any side effects from the elmiron except for the daily headaches. I did go off it completely for about 3 months when I thought I might be in remission but the ic came back hard and now I'm afraid to stop taking it. Good Luck ! blink

        Comment


        • #5
          Thanks for your help guys. Liver dammage......will probably have difficulty convincing a doctor to give me that dossage than.....so very very drugged up already.

          I greatly appreciate the info!!!!
          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!

          Comment


          • #6
            I take 800mg/day for the first 6 weeks (that's how long it's been), going down to 600mg/day now and they will test my liver soon.

            Honestly, I've been on Elmiron 2x now and 800 doesn't feel much "quicker" or better than the 300 dose.

            Comment


            • #7
              Wanted to add that there are people on the higher dose and they have the liver panels done periodically and they are fine. My doc just wasn't comfortable.
              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

              Comment


              • #8
                thank you very much everyone for your help. I truly appreciate it very much. I can tell I need to keep researching this and bring a lot of info with me if I want to say why not this to my doc.

                Thanks so much.
                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]er.net please contact me...I am here to help!

                Comment


                • #9
                  Does anyone know how long it should take the upped dose to help?


                  I went from 300 to 600 and so far can't be certain that it helped it anyway....I do know I slept through a few days because of it. If anyone knows how long it should take please let me know.
                  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!

                  Comment


                  • #10
                    Hi, Katrina, my uro upped me to two tablets 3 X a day for a month, when that didn't seem to help, he just recently upped me to 3 tablets 3 X a day (900 mg total per day) in the hopes that it will help. He is leaving me on that level until I experience a remission, then we can try backing down. But he has no problem with me staying on 900mg per day for several months or even up to a year if that's what it takes.

                    The only side effects I have noticed is a temporary diarhhea/gas situation each time I up my dose, for about a week until my body gets used to it. The same thing as when I first started the med. But, I react pretty mildly to Elmiron I think as opposed to some people who react very strongly to it with bad side effects.

                    I can't answer as to when it starts to help more because I'm still in a flare (even with hydrodistention, grrr!) and haven't been helped yet. I've been on a higher dosage (600mg per day) for almost a month, and just last week started the 900mg dosage.

                    Blessings, Lori

                    Comment


                    • #11
                      My uro has said that it is possible to prescribe 600-1000mg a day, and that if I wanted to try that, he'd certainly do it... I decided to research this option before agreeing to it.

                      What I came up with is this: there IS research out there citing the safety of such high doses, and some of it shows an increased benefit, while the rest shows no difference in out come whatsoever. HOWEVER, the caveat for me was that a lot of the research done on the higher dosages has been sponsored by the company that makes Elmiron.

                      Now, I'm not saying that it makes it BAD research, I'm just saying it may be more BIASED than an independent research study... a company, after all, has a vested interest in whether or not you take more of their product, if you get my drift. I think this is an important thing to consider.

                      There is the risk of liver toxicity. In addition, my opinion is that in a lot of us IC patients, the risk of liver toxicity may be even greater than the study groups -- as many of us are taking pain meds containing acetominophen and/or drugs like Diflucan for yeast on a regular basis, and both of these types of meds ALSO up the risk of liver toxicity.

                      I decided to just stick it out with 300 mg per day of Elmiron... I'm essentially waiting for more independent research to come out on safety and efficacy of higher doses.

                      BUT -- this is just my opinion.... I'm not giving anyone advice one way or the other, I'm simply explaining how I made my own personal decision not to go higher on the Elmiron....
                      ****
                      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.

                      Comment


                      • #12
                        Thanks for the replies. I have been on the 600 for about 8 weeks now.....I have few side affects from elmiron...infact when I started the 300 I don't think I had any. Toxitity...well I am tested often....and if this doesn't help I will stop the higher dose....but right now since elmiron helped me so much ....but than I later got worse....I am really looking for more help. Thanks so much
                        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!

                        Comment


                        • #13
                          You know Katrina, that pretty much happened to me, too, and I think I read of one other case too where it worked at first then stopped working. And I read one blurb somewhere from one uro who said Elmiron becomes less effective in some individuals with time.

                          On the other hand, one of the topmost IC experts, Dr. Parsons, says it becomes MORE effective with time so I don't know quite what to think. I think sometimes that we are all so individual that I will never be able to think this or that is impossible with IC. That even if it works for 999 patients there will still be that one patient it doesn't work for.

                          I'm a little disappointed because my uro called me, my liver enzymes are up and I have too much calcium in my blood. So that means cutting way back on Prelief and TUMS for me, and also maybe stopping Elmiron because it's the only medicine I'm taking right now that I can think of that sometimes has an adverse impact on the liver. I am taking Percocet, but they say you can take up to 6 per day with no ill effect and generally I have been taking anywhere from 2-4 a day depending on how I'm feeling.

                          Anyway, I went to give more blood for labs today to double-check things but it looks like I might be having to give up Elmiron too. Seems like my choices for treating my IC are getting narrower and narrower all the time

                          Blessings, Lori

                          Comment


                          • #14
                            So so sorry Lori. Really wish things were going better for you. So there are others that got worse with time while on Elmiron....scarry. Why is too much calcium in the blood bad?

                            Hope things improve.
                            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!

                            Comment


                            • #15
                              Hi, sweetie, thank you. It helps to just hear someone else say "I'm sorry for you" when you get disappointments like this, you know? I feel like I've just been beating my head against the wall trying to find something that works for me, for IC. It's like my body is just being so difficult.

                              Hypercalcemia is bad because (besides being a potential marker of cancer that has metastisized to the bones, LOL) oh another list showed fatigue as a symptom and I've been sooo tired and lacking energy lately...maybe partly due to my hypercalcemia:

                              What causes Hypercalcemia?

                              The most common causes of hypercalcemia are: poor kidney function, hyperparathyroidism, cancer, excessive intake of vitamin D, and therapy for peptic ulcers.

                              Hyperparathyroidism is the excessive secretion of parathyroid hormone by one or more of the parathyroid glands.

                              Cancer causes hypercalcemia by increasing calcium levels in the blood and destroying bony tissue.

                              What can happen when hypercalcemia occurs?

                              Dehydration, loss of body water
                              Loss of appetite
                              Weakness
                              Weight loss
                              Nausea and vomiting
                              Constipation
                              Frequent urination
                              Kidney stones
                              Mental status changes, confusion
                              Coma
                              Irregular heartbeat

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