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

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  • #31
    glad to know that and happy that you are doing better!
    Mel


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

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    • #32
      One more week before my Elmiron instill. Oh gosh, I am hoping for some long term relief. My hubby thinks even the urologist may be miss diagnosing me.

      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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      • #33
        Well, I had my first Elmiron instill. What I didn't know is that the nurse told me I would be getting them once a week for six weeks. I just had heparin once a month. For all those who get their instills at the doctor's office weekly, what do you do when you have your period?

        For those allergic to sulfa, but had Elmiron instills, did you get any allergic reaction?

        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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        • #34
          They just clean you up and put the meds in?
          Blessings,
          Ruth

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          • #35
            Thanks for the info. I felt embarrassed to ask, but having 6 weeks of instills does come the period.

            Does anyone have sulfa allergies, but were able to do the Elmiron instills?

            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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            • #36
              To those of you doing elmiron instills, how often did you do them, when did you get results, and to those that had a lot of improvement, what was your maintenance schedule, like were you willing to decrease how often you do them?
              Dianne

              My bellydance "sisters" , our dogs, and me.

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              • #37
                I have similar questions as above. I posted on another Elmiron thread that my URO doesn't seem to know about Elmiron instills. You experts - do the docs tell you that it avoids side effects like on the liver and hair?
                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.

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                • #38
                  I haven't heard anyone say but I would think there wouldn't be any liver/hair issues because it wouldn't be absorbed systemically.
                  Dianne

                  My bellydance "sisters" , our dogs, and me.

                  Comment


                  • #39
                    I was told that the instills don't go through the bloodstream so a person wouldn't have the side effects as the oral med. Yet, after my first instill 7/14/05, my throat felt swollen and it lasted for 9 days. I skipped the next week and felt better. Then, I had my second instill on 7/28/05 and 4 hours later my throat felt swollen again and it lasted 10 days. I skipped the 8/4/05 instill to see if my throat would feel better. I have been ok for 3 days and I am supposed to go in this coming Thursday.

                    I had a swollen throat feeling in the January 2005 that lasted 2 weeks after being on Elmiron for 2 weeks and continued taking the med even though my throat felt awful. My primary care doctor had me stop it because he said not too much is known on the side effects despite research. I was given Prednisone steriod to reduce swelling. I have had a swollen throat feeling on and off for a couple of days between stopping the Elmiron and beginning the instills. I saw an ENT in case something else is going on and will have a nasal scope to check if anything is wrong with my sinuses that is triggering something in my throat or whether there is something in my throat. I don't look forward to having an optic fiber up my nose, but it beats having a cystoscopy in the urethra while awake in the uro's office.

                    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

                    Comment


                    • #40
                      bunnykinb,
                      Sounds like it did get into your system and that you are allergic to it. Sounds scary. Maybe a leaky bladder lining lets things thru? Maybe a blood test would show if it gets into your system. When I did the RTX study (which failed) after the instill they tested my blood to see if it came thru at all. I didn't know if I had RTX or placebo.
                      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


                      • #41
                        The uro did say that the instills can leak through your bloodstream. I asked him this 2 weeks ago. Right now, I am getting the instills every 2 weeks instead of every week.

                        I had the nasal scope which didn't feel comfortable, on August 10. Everything looked normal. The ENT doctor said I should see a GI doctor because I might be having esophagus spasms.

                        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

                        Comment


                        • #42
                          I had a lot of pain again last night soon as I lay down. I hope this heals up soon. I took two Tums the night before and fixed it but I generally can't get away with tums two days in a row. I can't handle the carbonate and last night it healed the esophagus burning pain but my bladder has been horrendous every since. Always something....
                          Dianne

                          My bellydance "sisters" , our dogs, and me.

                          Comment


                          • #43
                            I was prescribed Zantac thinking it was heartburn, but it didn't help. I was given 1 mg of prednisone steriod, but that didn't help either and I didn't want to be on steriods. I bought some tums and have taken it when I feel that tightness, but it doesn't help. I already know that the GI doctor will probably order a scope to sholve down my throat. I have been poked in more places than I like to.
                            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

                            Comment


                            • #44
                              Has anyone asked their doctor how long the effectiveness of Elmiron instills last once instills have stopped? I am getting instills every 2 weeks for the next 8 weeks. I never asked my doctor about its effectiveness. I hate to jinks myself, but this has been the best that I have felt since Nov. 2003.


                              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

                              Comment


                              • #45
                                HI bunny,

                                glad to hear the instills are making you feel better. Do you still feel that your throat is swollen after the instills? Did you get to the bottom of why that was happening? What was it from?
                                I am having a cysto/hydro in 3 weeks.....and if I don't get any relief form that we are going to start the elmiron instills. I could never tolerate elmiron orally as it did a terrible number on my gut. I am very sensitive to meds.
                                Are you on any oral meds besides doing the instills?
                                Just curious to know what is working for you.
                                Hope you continue to feel better!
                                Take care,
                                Mel


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

                                Comment

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