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

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  • #16
    Hey Mel,
    Let me know how it works out for you. I hope you are able to tolarate it. I am SOOOOO SCARED that I dont dare do it but I asked the nurse today about it and she said that she can train my husband to do it. YEA I hope that he can go through with it.
    Blessings,
    Ruth

    Comment


    • #17
      Ruth & Mel,

      Urocit-K is supposed to reduce the acidity in the urine, it is also to help reduce kidney stones. I started taking it 2 times a day beginning April 2005. I was still having lots of burning so when I went in June 2005, I was increased to 3 times a day. I still get the burning which is a pain in the butt or should I say, pain in the pee pee. The 25mg nightly of Atarax doesn't seem to be helping either. I also started taking samples of Detrol LA last week, but I still am peeing every hour during the day. I have also increased my water intake another 2 glasses. But, even before Detrol LA, I still was going every hour. 7/14/05, I will get my first Elmiron instill. But, someone mentioned there was grit left over inside and it hurt for days after. Now, I am worried about that.

      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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      • #18
        bunny,

        I've been wrorried about that too but in light of the way that I have been feeling I really don't have a choice.
        I'll let you all know how it goes.
        Mel


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

        Comment


        • #19
          I will tell you ladies right know, Elmiron instill are way better than DMSO I dont know if you have ever had them but they are painfull? Elmiron is wayyyyyyyyyyyyyy better. Good luck.
          Blessings,
          Ruth

          Comment


          • #20
            I'm just learning all the treatment options for IC...you can have Elmiron instills and take it orally? Why wouldn't that be one of the firts courses fo action then? I am just starting Elmiron 100mg 4x a day and DMSO..OUCH...but would do anything right now for relief. Is this something I should suggest to my uro? (Elmiron instills) Also, is it easy to do at home? They talked a little about me doing it myself...little hesitant though.
            Kelly
            KellyAnn......Kell for short

            Official diagnosis of IC- 1994
            I went to a Urologist, was dx'd and underwent 3 DMSO treatments, then my Uro shot himself. I couldn't bring myself to go back to another one until 2004. Of course insurance and 4 boyz later played a part in that one
            Interstim Implant 2006

            Early stages of cervical cancer - 1992 caught in time Thank God!

            Hysterectomy (full) - 2001 the day after 9/11.....something I will never forget! Due to severe endometriosis.

            Osteopenia(sp), beginning stage of Osteo. -2003
            Fibromyalgia - 2003
            Migraines - lifelong

            I was blessed with 4 gorgeous boyz, and have the BEST hubby ever! My family is very supportive and help me anytime I need it. I thank God every day for what he has given me

            Visit my family website, it hasn't been updated since January, but it's fun to look at anyway

            www.shanekellyandtheboyz.com
            try not to skip the intro it's great!

            Comment


            • #21
              Hi Kelly,
              The Elmiron instills are way better cuz it goes directly into your bladder. It works 90% better than Oral Elmiron.
              Blessings,
              Ruth

              Comment


              • #22
                Ruth,

                how fast before you feel results form the Elmiron? Do they mix in anything else like lidocaine? I haven't had DMSO in a while. They were horrible!
                The uro I am using now doens't like the DMSO. she says it's too agressive. she makes a cocktail for me....there are 5 things in it.
                thanks,
                Mel


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

                Comment


                • #23
                  Ruth....can I request this treatment instead of the DMSO? I am still in terrible pain from it (had it yesterday in the am). How often do you do the Elmiron instills? I was told yesterday that if I needed to have immediate relief from a flare that I could have an instillation and that it had several things in it. Including Elmiron, hep, lido, and something else...is that the same thing as an Elmiron instill? Sorry for all the questions I'm still learning..Thanks!! Kell
                  KellyAnn......Kell for short

                  Official diagnosis of IC- 1994
                  I went to a Urologist, was dx'd and underwent 3 DMSO treatments, then my Uro shot himself. I couldn't bring myself to go back to another one until 2004. Of course insurance and 4 boyz later played a part in that one
                  Interstim Implant 2006

                  Early stages of cervical cancer - 1992 caught in time Thank God!

                  Hysterectomy (full) - 2001 the day after 9/11.....something I will never forget! Due to severe endometriosis.

                  Osteopenia(sp), beginning stage of Osteo. -2003
                  Fibromyalgia - 2003
                  Migraines - lifelong

                  I was blessed with 4 gorgeous boyz, and have the BEST hubby ever! My family is very supportive and help me anytime I need it. I thank God every day for what he has given me

                  Visit my family website, it hasn't been updated since January, but it's fun to look at anyway

                  www.shanekellyandtheboyz.com
                  try not to skip the intro it's great!

                  Comment


                  • #24
                    I had six heparin w/lidocaine instillations. They did nothing for me. I don't know if I should have been taking Urocit-K back then while doing the instills or not. But, sometimes it would burn for days, while other times it didn't. It might have been because on certain days I had been in a flare.

                    I can't do DMSO because of the sulfa; so hopefully, Elmiron instil will help. Two more weeks before that is done at the uro's.

                    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


                    • #25
                      I heard that some people had immediate relief and others didn't, so I guess it varies...as does everything else with this disease After the DMSO I burned sooooo bad and am still, so I wonder if it's going to be a good course of treatment for me. I will have to ask about the Elmiron next week. Yesterday was the first of 6 scheduled DMSO's...so we'll see. Good luck with yours, let me know how it works. Email me or post...I'm interested in all info on this that I can find. Thanks! Kell
                      KellyAnn......Kell for short

                      Official diagnosis of IC- 1994
                      I went to a Urologist, was dx'd and underwent 3 DMSO treatments, then my Uro shot himself. I couldn't bring myself to go back to another one until 2004. Of course insurance and 4 boyz later played a part in that one
                      Interstim Implant 2006

                      Early stages of cervical cancer - 1992 caught in time Thank God!

                      Hysterectomy (full) - 2001 the day after 9/11.....something I will never forget! Due to severe endometriosis.

                      Osteopenia(sp), beginning stage of Osteo. -2003
                      Fibromyalgia - 2003
                      Migraines - lifelong

                      I was blessed with 4 gorgeous boyz, and have the BEST hubby ever! My family is very supportive and help me anytime I need it. I thank God every day for what he has given me

                      Visit my family website, it hasn't been updated since January, but it's fun to look at anyway

                      www.shanekellyandtheboyz.com
                      try not to skip the intro it's great!

                      Comment


                      • #26
                        When I had the DMSOs done they burned like crazy! the nurse would put the stuff in and leave it in for 20 minutes then take out the cath and send me home. She told me to hold it in for and hour. I would go home shaking and in such pain! the I wouldneed to lay down for the rest of the day. The relief would start ot came late that night and the next morning. It would give me relief for only a couple of days at the most.
                        The uro i use now does her own cocktail....she doesn't like the DMSO...she feels it's too aggressive and rips up the bladder wall ...which then allows it to heal. that's how you get the relief. she said in the long tun it's now worth it.
                        the cocktail that she mixes is: heparin, antibiotic, sodium bicarbonate, marcaine, cortisone. When I first did these with her a few years ago they burned too! I started them again with her about 2 months ago and they cause me no discomfort and actually start to relieve the pain because of the marcaine with in a few hours. Of course when it wears off the pain returns. But the idea is to do a few to get the badder to heal so that you have a longer period of relief. For me, I think the reason that they are not burning me this time around is because I've been on estrogen for about 7 months. I was not on HRT after I had my hysterectomy because of possible endo but that only caused me to atrophy. I think that made me so much more sensitive as all of my tissues were thinner in that area.
                        Anyway, I'm getting another one of those cocktails tomorrow morning and then going to start Elmiron probably next week. I have to ask her if I can mix in some marcaine.
                        Mel


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

                        Comment


                        • #27
                          Hi ladies,
                          The first instill of the Elmrion and Lidocaine and something else I cant spell but its a angelstic? I felt greaaaaaaaaaaaaatttttttttttttt I felt like I did not have a bladder I could not belive how fast it worked for me? that lasted about 6 hours of relife the second time I got about the same 6 hours.

                          I am going in on the 5th of this month and getting another treatment, they are going to teach my husband how to do it? what do you ladies think. I am afraid. Please wish me good luck and I hope he has the patience to do it and not hurt me????

                          Have a great 4th and be safe out there.
                          Blessings,
                          Ruth

                          Comment


                          • #28
                            I have someone else on the board who I PM frequently since over a year now. It is great to have someone to discuss my problems with IC and that understands. Anyway, she does at home instills and is now a pro at it. It takes time and there will be times that some days go smoother than others. I hope Ruth has a patient instructor on at home instills.

                            I lasted 6 days without any pelvic pain, urethral pain but here it is again.

                            After all the ouchies for the DMSO, I don't even want to bring it up to my uro.

                            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


                            • #29
                              Has anyone had longer periods of remission ater having more treatments.
                              I also get about 6 hours of relief after my instills........but then the pain returns and it is upsetting. I'm wondering if the longer you so Elmiron.......the longer you eioll be paind free. Do they take several sessions to do longer term relief. 6 hours is a tease.
                              I never made it to my appt yesterday as AI got an allergic reaction to a mes and was sick all day. Hopefully they will have time for me next week. This is when being able to do your own instills at home owuld have come in handy!
                              Mel


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

                              Comment


                              • #30
                                Mel,
                                I know the longer I take Elmiron the better my bladder feels and I dont get as many UTIS and I over all feel better.
                                Blessings,
                                Ruth

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