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  • all lost if stopped a week?

    I was on elmiron almost 3 months but I also was developing heart palpitations which my doctor tested me for (24 hour halter monitor and then heart ultrasound) . She said they were benign, not to worry, but they really feel weird and scary. Even though she did not think it was the elmiron, I stopped for about 8 days as a test (someone else here got palpitations from it). But it did not seem to make a difference as the palpitations continued. I don't know if it was the elmiron or if the IC was in a calm state but after 3 months the IC was stable. I stopped elmiron and then I got a flare and now I've started up elmiron again and I'm wondering if the break in elmiron has set me back to square 1 as if I never even took it. Anybody take a break from elmiron and then restart it?
    I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

  • #2
    You may have lost some of it's strength but I don't think you are back to square one. I have had to stop for a week when my mail order didn't come in time and I got back on track after a week or so(to the point I felt it was helping again). I would just be extra careful to not eat around the time you take it and drink plenty of water to get the most effect from them. Also, I wouldn't take any chances with food or questionable drinks.

    That time I was off of elmiron was when I realized how much the elmiron was helping me.

    I hope this flare passes quickly for you,
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

    Comment


    • #3
      that's good to know

      Thanks sailaway,

      I guess I ate or drank some bad things and so I got into this flare. As I said I don't know if the elmiron was helping before because I have had good stretches before without anything, but maybe it was. I'm taking prosed and a little valium at night but the flare is still bad. If if doesn't abate I'll have to see if there is infection, but it doesn't quite feel like that. So I'll see. Thanks!
      I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

      Comment


      • #4
        YOu should probably go ahead and be checked for an infection. I know from experience that utis feel different for those of us with IC. When I have one I have a hard time telling the difference between infection and flare. Utis don't feel like they did before I had IC. Might be worth checking into. I would hate to see you suffer longer than you have to.
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

        Comment


        • #5
          I am also in the same situation. I was taking Elmiron 200 mg twice a day for over 2 years and in November went 4 days without my medication. I also think i ate or drink something that might have caused my flare. I had been living symptom free for almost a year and a half. I was also able to eat and drink things not in the IC diet with no flares. Now we are nearing the end of February and Im still no where near where I was before. My doctor even increased my dosage to 300mg twice a day. I have been so frustrated and depressed lately. I'm hoping my elmiron will kick in soon.
          Michelle Rodriguez
          Diagnosed with IC in 2008 by cystoscopy and biopsy
          Pelvic floor disfunction, Recurrent yeast infections and bacterio vaginosis. Diagnosed with overactive bladder January 2012
          Currently taking:
          Elmiron 200mg twice a day
          Rapaflo 8mg
          Zyrtec, prelief
          Uribel as needed
          Vesicare as needed
          Have tried:
          Xanax, vesicare
          Sanctura (gave me insomnia)
          Celexa, wellbutrin
          Prestique
          Cystoprotek
          Aloe Vera pills
          D-mannose
          Bladder instills

          Comment


          • #6
            Shelly 79 - How long did it take for the elmiron to work the first time around? You would think 4 days off it would not set you back. I cannot afford to stop it again unless it is for good! Hope you get back on track. I just want to be able to drink a glass of wine or coffee without the guilt and later pain. I'm expecting if I get to that point I'll be wearing a wig - my hair is thin to start with. I can't imagine myself with a wig.

            I see you take cystoprotek, too. Do you think the cystoprotek works, too? It did not do anything for me and I took it a long time. I still have more bottles of it, too. If elmiron works on me but cystoprotek doesn't , that would be interesting. Pv
            Last edited by purpleviolet; 02-20-2011, 05:40 PM. Reason: added more
            I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

            Comment


            • #7
              I don't think "all is loss" for you. I know that I have stopped for a week or even cut down on my dosage due to running out of med or having no $$. Heres hoping you get back right on track.

              Comment


              • #8
                Originally posted by purpleviolet View Post
                I was on elmiron almost 3 months but I also was developing heart palpitations which my doctor tested me for (24 hour halter monitor and then heart ultrasound) . She said they were benign, not to worry, but they really feel weird and scary.
                I don't know about the elmiron because I don't take it, I wonder if I should....

                Anyways, I started getting heart palpitations too. I went for a treadmill test and they said the same thing that they were benign, they said it was a premature beat and then the heart plays catch up and thats what you feel. I get them a few times a week for a few seconds. They are weird and it feels like your heart is jumping around right? I thought it was related to my thyroid for awhile but I have been on meds for a few years now. I don't get them as often as I used to though.
                Cindi


                Gelnique for frequency/urgency - works great
                Macrobid after sex
                Prilosec, continuous birth control pills
                synthroid .088mg, mucinex-d, restasis

                Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                Great treatment flowchart on page 19 of the pdf

                Comment


                • #9
                  Hi Purpleviolet it took a few months before the Elmiron started working. Intially I was taking it for about half a year with no effect. I then switched urologist who uped my dosage from 100 mg 3x a day to 200 mg twice a day. She said it would be easier for me to take my dosage first thing in the morning and right before bed. Since you have to take it on an empty stomach.
                  You wouldn't think that 4 days off my meds wouldn't set me back, but it did. The thing with Elmiron is that it just coats your bladder walls it doesn't heal it.

                  Thankyou for your words of encouragment. I've been so depressed lately. I'm newly married and this is affecting my marriage. My husband is very understanding and supportive but I feel like our marriage suffers because I'm not able to have intercourse that often. And its so depressing to not be able to have a glass of wine or a beer once in a while. We went out with friends last weekend and I feel so left out while everyone else is drinking. And yes my hair is thin too. I'm hispanic so my hair is normally thick. I've noticed after being on the drug for so long my hair doesn't fall out as much as it did once I first started it. The cystoprotek I haven't noticed any changes since taking it but will continue. I also have not been following the IC diet consistently. I need to be more disciplined. Maybe thats part of my problem too.

                  I have ben so discouraged lately but it helps that others are going through this same thing. It helps me feel not so alone. Thanks for listening. I hope your elmiron starts working again for you again soon. Please keep in contact.
                  I'm thinking about going back on celexa to help me with the depression and anxiety this illness causes me.
                  Michelle Rodriguez
                  Diagnosed with IC in 2008 by cystoscopy and biopsy
                  Pelvic floor disfunction, Recurrent yeast infections and bacterio vaginosis. Diagnosed with overactive bladder January 2012
                  Currently taking:
                  Elmiron 200mg twice a day
                  Rapaflo 8mg
                  Zyrtec, prelief
                  Uribel as needed
                  Vesicare as needed
                  Have tried:
                  Xanax, vesicare
                  Sanctura (gave me insomnia)
                  Celexa, wellbutrin
                  Prestique
                  Cystoprotek
                  Aloe Vera pills
                  D-mannose
                  Bladder instills

                  Comment


                  • #10
                    Re: all lost if stopped a week?

                    Hi Michelle,

                    So how are you feeling now these days? How long before the Elmiron kicked in this second time around?

                    Comment


                    • #11
                      Re: all lost if stopped a week?

                      Originally posted by mariaTSX View Post
                      Hi Michelle,

                      So how are you feeling now these days? How long before the Elmiron kicked in this second time around?
                      Hi Maria,
                      I am feeling great these days! I still have my days when I have a flare. I'm currently taking Elmiron, Rapaflo and Allegra daily. I really owe alot of how I feel to the drug Rapaflo. It helps control the urgency and the feeling to always have to go to the bathroom. I had my first baby about 6 months ago and was in remission all through my pregnancy but unfortunately my IC came back full force after I gave birth. It took about a month on meds before I felt good again. Hope this info helps you.

                      Michelle
                      Michelle Rodriguez
                      Diagnosed with IC in 2008 by cystoscopy and biopsy
                      Pelvic floor disfunction, Recurrent yeast infections and bacterio vaginosis. Diagnosed with overactive bladder January 2012
                      Currently taking:
                      Elmiron 200mg twice a day
                      Rapaflo 8mg
                      Zyrtec, prelief
                      Uribel as needed
                      Vesicare as needed
                      Have tried:
                      Xanax, vesicare
                      Sanctura (gave me insomnia)
                      Celexa, wellbutrin
                      Prestique
                      Cystoprotek
                      Aloe Vera pills
                      D-mannose
                      Bladder instills

                      Comment


                      • #12
                        Re: all lost if stopped a week?

                        Originally posted by shelly79 View Post
                        Hi Maria,
                        I am feeling great these days! I still have my days when I have a flare. I'm currently taking Elmiron, Rapaflo and Allegra daily. I really owe alot of how I feel to the drug Rapaflo. It helps control the urgency and the feeling to always have to go to the bathroom. I had my first baby about 6 months ago and was in remission all through my pregnancy but unfortunately my IC came back full force after I gave birth. It took about a month on meds before I felt good again. Hope this info helps you.

                        Michelle
                        And Maria I know my original post was from a few years ago so I can't remember the exact amount of time before my Elmiron starting working again. I did continue my Elmiron during my pregnancy per my ob/gyn recommendation. I would like to reiterate that alot of my symptoms are urgency and a little bladder pain. The drug Rapaflo helps me tremendously. Also I have had many cystoscopys with bladder distention and rescue solutions to help get my bladder back on track. I had one a month after I had my son too.
                        Michelle Rodriguez
                        Diagnosed with IC in 2008 by cystoscopy and biopsy
                        Pelvic floor disfunction, Recurrent yeast infections and bacterio vaginosis. Diagnosed with overactive bladder January 2012
                        Currently taking:
                        Elmiron 200mg twice a day
                        Rapaflo 8mg
                        Zyrtec, prelief
                        Uribel as needed
                        Vesicare as needed
                        Have tried:
                        Xanax, vesicare
                        Sanctura (gave me insomnia)
                        Celexa, wellbutrin
                        Prestique
                        Cystoprotek
                        Aloe Vera pills
                        D-mannose
                        Bladder instills

                        Comment


                        • #13
                          Re: all lost if stopped a week?

                          Congratulations on the birth of your baby! =) My symptoms are mainly bladder pain and burning. Thanks for your reply. Glad to hear you're doing better. As for me, I have some okay days and some bad. I'm going into my 4th month of taking the Elmiron. Is sure hope it's doing something. I get excited when I have a better day, but only to wake up the next morning feeling in pain again. Was it like this for you too where your symptoms wax and waned?

                          Comment

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