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

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  • #46
    Mel,

    I have had UTI's in the past, but have always been a major pee pee buddy since I was a kid. I started having a feeling of UTI's that never seemed to go away since Dec.2003 and kept going back to the doctor until finally I asked to see a urologist in Mar. 2004. The urologist diagnosed me with IC in June 2004 but in between Mar. and June I was left in pain. I started with heparin instills monthly from Sept.2004 until Feb.2005 but found no relief. I started Elmiron Dec.2004 but I kept feeling a swollen throat and did have a swollen throat maybe from the Elmiron that I had been on for a month. My primary care doctor said to get off Elmiron because the sulfate in it might be causing the swollenness in my throat since I was allergic to sulfa. But, then after from time to time, I kept having that feeling.

    In Mar. 2005 I appealed my insurance to see another urologist who started giving me Urocit K 2 times a day and Atarax 25 mg at night until June 2005, but I kept having urethral burning and pelvic pain so I asked to try Elmiron instills. I get them every 2 weeks for 8 weeks and have increased Urocit K to 3 times a day. This is the BEST I have felt since Dec.2003. I think it is the meds and Elmiron instills that have helped. But, I wonder how long the effectiveness will last? I never asked my uro this. The nurse said if I was feeling better then I would be sent back to the primary care doctor to continue administering the Urocit K and Atarax. However, it is not her call, but the uro's.

    Enough of the storybook,
    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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    • #47
      Oh, the ENT did a nasal scope to check my sinuses and voice box and they were ok. I have an appointment with a GI to see if I am having an esophagus spasm. If things check out there, maybe it is anxiety?

      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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      • #48
        Anyone reading this?
        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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        • #49
          hey bunnykinb!
          I have had the elmiron instills before. I had them once a week for 6 weeks. I was in
          a huge remission from my symptoms for a year and a half. I would occasionally have
          to take a pyridium if I ate too much of something I should not have ate. My symptoms
          came back about a few months ago. I had a cysto with hydrodistention that only lasted two weeks. Now I am having my elmiron instills again. I am on week 3 as of this
          Thursday. I also am on elavil and on pyridium plus as needed. The elmiron is the only thing that has really helped me. I have to do the instills because taking it orally gives
          me diarrhea or constipation. My hair also was falling out by the handfuls and I actually
          was getting missing patches on my scalp. The strangest symptom I had was a tightness in my throat like my throat was too small to swallow my food. But after being off of the oral Elmiron that went away in a few months. I hope yours will soon.
          Maybe this helps you. I hope you feel better soon.
          Monica78

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          • #50
            Oral Elmiron

            I have been taking oral Elmiron for about 9 years now. I need to have blood work every 6 months to check liver function, but no ill side effects yet. I am interested in the elmiron instill though, just heard about them. Any info please send to [email protected]
            Thank you

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            • #51
              I take the elmiron orally 3 times a day and have just started started back up with the elmiron instillations. Wow!! Everyone seems to have the instills at weird times.. I have my instills 3 days a week for about a month and then go to having 2 a month.. and so on!! I recently just changed uros because my old one wouldnt let me do the instills at home and I got to the point where I couldnt make the 60mile drive so often. expecially after an instillation. My new uro is about 10minutes from my house so it has made things easier on me. The only other instill i have tried is the DMSO.. but I really hated those and they caused me a lot of pain.
              Anyway, I too am allergic to sulfa, but I dont have any problems with the elmiron. I just always have a dry mouth.. but that is also a side effect from some of the other medications I take. If you want, you can e-mail me or send me a PM. I hope these treatments keep working for you!
              Crystal Harvey
              Shelter Behavior Program Coordinator
              Certified Pet Dog Trainer
              (802)455-1014

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              • #52
                elmiron instills

                Is this something that has to be done at the doctor's office or can it be done at home. My husband use to do the combo instills I did years ago.

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                • #53
                  Monica & everyone,

                  Thank you for responding and not letting this topic die. Everytime I have my instills, I have to take a benedryl for precautionary purposes. I had my 5th one today. I hadn't asked the urologist yet about how long the instills benefits last. Monica, it is great that yours last so long. I sure hope mine does. The nurse said if I am doing better that the uro will send me back to the primary care doctor for him to give me my prescriptions for atarax and urocit-k. And, if I feel bad again, I will have to ask for another referral. When I talk with the uro in 2 weeks, I will ask him for follow-ups to see how I am doing rather than throwing back into the pile where the primary care doctors don't know how to treat IC. My throat feels a little swollen after hours later from the instill. I have a GI appointment this month to check further into my throat tightness since the ENT scope found nothing.

                  Feel free to PM me. I welcome your support.

                  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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                  • #54
                    hey bunnykinb
                    Please let us know your GI appointment goes!
                    I wish you will feel better for a really long time!

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                    • #55
                      Monica,

                      How was your small throat diagnosed? Through an endoscopy? And, how long did you have problems swallowing food or was that with the Elmiron only? I postponed my GI appointment until Oct. 6 because I had too many things going on Sept. 22 and the GI is out the following week. My hubby was just saying that this is the longest I have gone without complaining of pain. It is now 5 weeks, but I certainly do not call it remission. If I ever can be pain free for a year, maybe then.

                      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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                      • #56
                        HI bunnykinb,
                        I never saw a GI doc about my throat and it did go away on its own, thank goodness.
                        It took a few months though. I am now on week four of my instills and I sure can
                        tell a difference in my bladder right now. I hope it continues to get better.

                        Monica

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                        • #57
                          Monica,

                          How long did your doctor initially say the Elmiron instills would be helpful? I go in this Thursday for my 6th Elmiron instill. I will ask the urologist the same question I asked you. My husband is so happy that I have been doing good for almost 2 months now. But, I want to feel good much longer than that.

                          I noticed though, during my period, I still have the urethra burning. Once I go back on the active pills again, I am good again.

                          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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                          • #58
                            my doc said if it didn't last a long time that we would have to start the instills again
                            for another 6 weeks. So far so good, my last instill is next week. I have just quit smoking this week so my bladder does feel better. I am a little stressed out though.
                            My uro said it will different for everyone, maybe 6 months, a year. It just depends
                            but if it doesn't help, I will try again. I hope you find long lasting relief.

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                            • #59
                              My husband contacted Elmiron and they know nothing about elmiron being instilled in the bladder. they only offer the oral pills. Where do you get the instills from?

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                              • #60
                                Hey cayugaseagull,
                                My doctor gave me a prescription of the oral elmiron capsules. I take those pills with
                                me to the office and the nurse dissolves them down into a solution, a cocktail that contains
                                elmiron caps, lidocaine and something starting with a B.
                                They have really helped me.

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