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Anyone on oral elmiron and elmiron instills at the same time?

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  • #1

    Anyone on oral elmiron and elmiron instills at the same time?

    Hi everyone,
    Just wondering if anyone takes elmiron orally and at the same time has elmiron bladder instills? I have just finished 12 weeks of elmiron bladder instills, once a week. I had another cysto with hydrodistension yesterday, and the Dr. told my husband that he wants to continue with the bladder instills and that he also wants me to take the elmiron, 3 100mg capsules every day. I have had no trouble with the instills, but am a little worried about the oral elmiron as I do have bad irritable bowel syndrome and have heard that it can be hard on the tummy. I also have to take lipitor for high cholesterol, and so I do also worry about my liver. I do have my liver enzymes checked for the lipitor, and I know they will do that while I am on the elmiron, but I guess I am just a worrywart... banghead Any thoughts? Thanks to you all for being so supportive.
    grouphug
    Kandy
    Always try to do the right thing; it will astonish some people and gratify the rest- Mark Twain



    DX: IC-2003, Systemic Lupus w/secondary Sjogren's-2009, Total Hysterectomy with BSO-2005, IBS-forever it seems, Renal Tubular Acidosis, Vitamin D deficiency-2008, Vulvar Vestibulitis-2002, Pudendal Neuralgia-2008
    I also try and manage depression/anxiety, Migraines, Too many kidney stones to count-starting in 1991 to the present
    I had my 1st urethral surgery at age 4, have had urethral syndrome from then on.
    Failed treatments: Elmiron both instilled and oral caused severe increase in liver enzymes
    Elavil and Ditropan-severe bladder retention
    Currently on pain mgmt, lidocaine gel topically also gives some relief after initial 2-4 min burning when applied.
    Prior treatment included pelvic floor therapy and TENS unit, both of which I still do as needed.
    Tags: None
    • #2
      I used to do both at the same time. It never caused me any problems but all the cathing made my urethra feel so raw I had to stop. Once I went into remission I stopped it altogether. It did make my symptoms better though. I would talk to the doc about your liver concerns. Good Luck!!

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        • #3
          havingsuccess,
          Thanks for your reply. My urethra is not "liking" all that cathing, either, but I am hopeful that in the long run it will work...My Uro. has me applying Estrace cream topically every night to try and help with the urethral symptoms, so I hope it helps...Thanks again, and Happy New Year!
          Kandy
          Always try to do the right thing; it will astonish some people and gratify the rest- Mark Twain



          DX: IC-2003, Systemic Lupus w/secondary Sjogren's-2009, Total Hysterectomy with BSO-2005, IBS-forever it seems, Renal Tubular Acidosis, Vitamin D deficiency-2008, Vulvar Vestibulitis-2002, Pudendal Neuralgia-2008
          I also try and manage depression/anxiety, Migraines, Too many kidney stones to count-starting in 1991 to the present
          I had my 1st urethral surgery at age 4, have had urethral syndrome from then on.
          Failed treatments: Elmiron both instilled and oral caused severe increase in liver enzymes
          Elavil and Ditropan-severe bladder retention
          Currently on pain mgmt, lidocaine gel topically also gives some relief after initial 2-4 min burning when applied.
          Prior treatment included pelvic floor therapy and TENS unit, both of which I still do as needed.

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            • #4
              Kandy,

              Your so welcome. If you ever wanna talk just pm me!

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                • #5
                  HI! my name is Sandy.
                  I am the new girl on the block. I am suffering from IC. Looking for someone to talk to. I have had it for three years. Has anyone been given pain medications by their doctor.Mine refuses to give me anything and tells me to take advil or Aleve. These do not relieve my pain at all. How about you?.
                  Thank you Sandy.

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                    • #6
                      He guys- its Nina . I'm two days on the board.
                      I can honestly say it took about 8 months before my body got used to
                      the oral elmiron. It also gave me diarrhea and made me queezy every morning. Now 9 months later the hair is coming out way too much in combs and if I just put my fingers through my hair the hair just comes right off in strings. Now I am taking 4 I00mg of Elmrion daily. I am supposed to bring it down from now. Although it did wonders for my bladder the side effects were extremely apparent.
                      Bye for now Nina

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                        • #7
                          OOOps Sorry Sandy I forgot to tell you. Hey its Nina again. Sorry My first urogyno gave me nothing for the pain. Diagnosed me with ic and said you don't need a cysto but you are a candidate for the interstim. When I went for my second opinion after a temporary excrutiating interstim, two uro's and a neuro said to me" What, you are not taking anything for the pain." They were appaled .My new uro in nyc Dr Marx gave me ultracet - a godsend. Do not sit and suffer. YOu can take it anytime you want and every 6-8 hours. Of course check your pharmacists if you can take it along with your other med.I take it with antihistamines and elmiron and asthma med. Ultracet that's the way to go . My first uro gave me nothing and I suffered.
                          Good luck,
                          Nina
                          Last edited by Nina 23; 08-15-2004, 03:22 PM. Reason: spelling errors

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                            • #8
                              Hey sandy,
                              Thats to bad that the Dr wont give you anything for pain. I would seek another Dr that is not right. They dont have to live with the pain on a daily basis.You have a right to fight for your pain.
                              Blessings,
                              Ruth

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                                • #9
                                  I am on 4 pills a day and did instillations twice weekly for 2 months ..No problems at all..what a HUGE difference tho..I haven't had any treatments for 5 weeks and I can tell I need to go back for more..
                                  After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!

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                                    • #10
                                      elmiron helps me, but i do have just about all of the bad side effects from it too, and i'm scared to find out if i have the "rare" side effects listed (hemmorhage and thrombo______?) you need to find another dr. QUICK to help w/ your pain!



                                      Originally posted by Sandy M.
                                      HI! my name is Sandy.
                                      I am the new girl on the block. I am suffering from IC. Looking for someone to talk to. I have had it for three years. Has anyone been given pain medications by their doctor.Mine refuses to give me anything and tells me to take advil or Aleve. These do not relieve my pain at all. How about you?.
                                      Thank you Sandy.
                                      [FONT=Lucida Console]/FONT]Surfer Girl

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                                        • #11
                                          is the estrace cream by prescription only?
                                          does it help with the spasms?
                                          i have a very hard time getting started peeing during the night but the darn pain still wakes me up so i try to go...
                                          just wondered if this cream could help before i go to sleep?

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                                            • #12
                                              Hi Ladies,
                                              I went to see dr lowell parsons yesterday and I am going to start on the Elmiron bladder instills 3 times a week. I am not really happy with it but I guess a girls got to do what a girls got to do. I have to drive a 1hour and 30 minutes to see him and that it what sucks,the driving. I just hope its all worth it. I hope everyone is doing good and have a great summer.
                                              Blessings,
                                              Ruth

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                                                • #13
                                                  I will try the Elmiron instill on 7/14/05. I can't take Elmiron orally, but will try the other route. The 2nd uro's office doesn't have solutions in his office so now I have to pay separately for them. OUCH. My first uro gave me heparin instills and the solutions were at the office, but they didn't help. Now, I have switched uros because I felt the first one wasn't too concerned with all my pain. The 2nd uro said IC is difficult to treat and there will be days with pain. But, I have too many days, weeks, months, and now a year and a half of pain. Why do we have to suffer so much? I will see what this uro will attempt with me a little while longer. Then, I'll have to switch doctors again. I also take Urocit-K 3 times a day along with Atarax once a night. The uro gave me 600 mg of Motrin but that does not help with the burning.

                                                  I sure hope the Elmiron instills will help, but I am not very confident.

                                                  bunnykinb
                                                  bunnykinb

                                                  6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                                                  tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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                                                    • #14
                                                      HI Bunnykinb,
                                                      Can you tell me what urocit-k is? When I went to see dr parsons he gave me the elmiron instill right there and then it I felt great for about 6 hours, I hope that once I start 3 times a week it will be better, I just hate the hour and a half drive? Well I will be thinking about you on the 14th good luck.
                                                      Blessings,
                                                      Ruth

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                                                        • #15
                                                          why hot ask the doctor to teach yo how to do it at home so that you don't have to make the drive.
                                                          i have an appt this week and the nurse is going to hsow me how to do it to myself. then I'm going to start the bladder instillations with elmiron at home. if i can tolerate the pills orally I'll do that too but I had a problem with them a few years ago.
                                                          I also started urocit-K yesterday. I thinmk it irritated my tummy after I took it but am going to try it again today.
                                                          do you have any relief with it....bunny? Aslo...how is the atarax working for you?
                                                          Mel


                                                          IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

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