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

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  • #61
    Cayugasegull,

    The nurse also dissolves the capsule with saline solution only then inserts it through a catheter. I am taking urocit-k 3 times a day and Atarax at night since March 2005, but I wasn't feeling better. Then July 28, 2005, I had my first instill and felt improvement within 2 weeks.

    bunnykinb

    Monica,

    I saw the urologist on Thursday; he said since I am not getting the typical instills every week for 6-8 weeks, and am getting them every 2 weeks, I have to get a total of 16 instills. I have only had 6 so another 10 to go. That will take me through February 2006. Man, that is a long time, but it is better than having burning and pelvic pain all the time. I have cut out the Atarax myself to see if I feel worse. I don't want to be on medications and need to try and cut a cost out.

    I see the GI doctor October 6, and if he doesn't see anything wrong with my throat, then it must be the Elmiron or stress causing the throat tightness. I started with the throat tightness 9/21 but didn't have my Elmiron instill until the next day. So, it really might be stress. If it is stress, then maybe I can do the instills weekly.

    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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    • #62
      Monica,
      Have you ever considerd doing the instills at home yourself, I went through the same thing that you did going back and forth to the drs and it was a pain, after 3 years they finally convinced me to do them at home and they showed my husband how to do it and then I ended up doing it myself. Good Luck
      Blessings,
      Ruth

      Comment


      • #63
        I started doing them at home myself about a month ago. Boy does it make life easier! Once I am set up I usually relax by reading a book. It tkae my mind off of things. Also, I've notice that I do a better job than the nurse as ther is no pain when I put it in! I've learned the exact angle to put it in!
        give it some thought...it might be better all around for you and it's not as bad as it sounds!
        Mel


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

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        • #64
          I am a baby when it comes to pain. I don't know if I could handle doing the instills at home. But, I have heard people using lidocaine to numb the area before inserting the cath.

          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


          • #65
            Well I work in the same hospital that my uro's office is in. I am an ultrasound tech on the same floor his office is in. So it isn't out of my way to get to it because
            I am already there. I have to work to pay the bills even if I don't feel like getting out of bed some days. But here lately I feel alot better. I just had week 6 of my instills
            done so maybe this time it will last a long time. I hate having that cath every week.
            I quit smoking all most 2 weeks ago. I think that has alot to do with it.

            Comment


            • #66
              Monica,
              I'm gad that you found some relief. I hope it lasts a long time too for you!
              What type of instills did you get?
              Mel


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

              Comment


              • #67
                hey i got the elmiron instills. It was an elmiron cocktail. I actually drank a coke
                and I still am not hurting. Soda is my #1 trigger. I really am feeling better. I also quit
                smoking 2 weeks ago, that could have alot to do with it also.

                Comment


                • #68
                  I had my 7th Elmiron instill Thursday, Oct. 6. I had been doing so much better since I started getting the instills on July 28. About 2 months of almost pain free. I was playing with the kids more. Well, I don't know what happened, but on Sunday, I started getting pelvic pain again. And, yesterday, I started with the burning. I really don't know what triggered it. When I have my next instill next week, I'll have to ask the nurse to check with the uro to see if the number of capsules for the instill should be increased.

                  Ugh.

                  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


                  • #69
                    I spoke to the nurse today. She said either my period caused the flare or that I was coming down with an illness. This passed Monday, I spent 2 hours at the doctor's office and was given antibiotics for bronchitis and maybe early stage of pneumonia. The nurse said I should wait to have my instill until next week when I will hopefully be healthier.

                    For those who do your own instills or have it done at the office, does your office or you do the instills when you are sick?

                    Oh, my insurance says I have to pay my co-pay for the instills even though I don't see the urologist. I already had 7 and have another 9 to go. Thankfully, the nurse said the doctor will waive the first 7.

                    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


                    • #70
                      I'm sorry to hear that you are not feeling better. Hang in there..."this too shall pass". I don't do instills when I am sick with anything else. It's just too much for me to do or handle...let alone driving to the drs office. I don't do them at home either because the only energy I have is to lay on the couch and rest!
                      Please feel better!
                      Mel


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

                      Comment


                      • #71
                        Has anyone who just does the Elmiron instills (no Elmiron orally) ever experienced hair loss? I don't think my thinning hair on top is really from the instills but wanted to get someone's opinion. I think I was wearing my hair in a ponytail too often.

                        I did go back to the doctor's yesterday for my little son who has bronchitis too. The doctor rechecked me and now I am taking Advair and prednisone too.


                        Thanks,
                        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


                        • #72
                          Hi Kiffy,
                          I was wondering with the Elmiron Instills do you have that body odor you have
                          with the DMSO's ?I am worried about taking the oral Elmiron too....I sometimes have
                          problems with meds so this is a concern for me....My uro mentioned the Elmiron
                          instills so that might be the route I will take...I will let you know if I start both
                          also...I wish everyone luck with there method of treatment I only hope we all
                          find what is best for us....Thanks for your input....

                          Patti G.

                          Comment


                          • #73
                            Patty G - I take oral Emiron (for six weeks) and was having Elmiron instills weekly as well. It didn't make any difference, so I switched back to heparin. I usually have trouble with meds, but haven't had any serious side effects with the oral Elmiron. No, there's no body odor with the Elmiron instills - unless you don't bathe! :-)
                            Stephanie

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                            • #74
                              Hi Everyone,
                              I just had an appt. with my uro today..I will be starting the Elmiron instills in a couple
                              of weeks for 3x a week for 6 weeks...Unfortunately they had no appts. for next week
                              so I have to wait a little longer than I wanted but hopefully it will be worth the wait.
                              I to didn't want to take Elmiron orally for the G.I issues bothered me when reading
                              about them...I so do hope that the instills work....I am nervous about the uretha
                              burning and some of the side effects from the cath I am hearing...I hope I can
                              handle it...Though my uro didn't say I could take the Elmiron orally and do the
                              instills at the same time...Is that something your uro decided on his or her own??
                              I am still confused by that...I hope that the instills work without having me take
                              the pill orally....Does anyone know how long these instills will work for after the
                              6 weeks is up...?? I am curious to know more about them...And if you did have
                              any side effects from the instills could you tell me about them.....I am to trying
                              to find that right mix of diet and meds...Good luck to all of you..I will let you know
                              how it goes...
                              Thanks
                              Patti G.
                              Ic for 2 yrs.
                              Meds
                              Allegra 180mg. for allergies.
                              rhinocourt for allergies
                              oxytrol patch
                              premarin cream on occasion (menopausal issues)
                              prelief for acid food

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                              • #75
                                Mel,
                                Let me know how you do with the home instills..I feel the same way going to the
                                dr.'s 3x a week for 6 weeks is going to be a pain but you do need to do what
                                you need to do...Good luck with that.
                                Patti G.

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