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  • Rescues instillations with elmiron

    hi Everyone,

    well, i am considering my first instillation as my pain has continues to be unbearable and of course, the elmiron is making all of my hair fall out. (by the way, my uro told me the 3-4% of patients who lose their hair is more like 1/3 of patients who lose it). anyway, it seems to me that havin the emliron placed directly in the bladder would ake way more snese than having so much of the oral med destroyed during digestion. why wouldn't they want to put it right where it belongs?

    my question is 2 fold: do those of you who take elmiron and have instillations have them add the elmiron to the mixture they are placing in the baldder with all the other meds? and do you continue to take it orally if so?

    i'm nervouse, but it makes more sense to put this medication directly into my poor little bladder. i think if it's making my hair fall out, what the heck else is it doing to my body before the measly little 25% of it that isn't lost through digestion is travelling around my innards?

    any insight would be great. i'm new to IC but not new to chronic, debilitating pelvic pain. i want to try the instills and at least attempt to get some kind of control over the IC to make sure another endo surgery is not needed. i've had 25 so far and i am just not ready for another at this moment. i was to make sure the pain is not the IC first.

    thanks everyone,

    laura r

  • #2
    Hi....
    I just recently started doing the rescue instillations that include heparin which is the active ingrediant in Elmiron that helps our bladder if I understand it correctly. The instillations help me a great deal, but only for a couple of hours and then I have irritation from the catheter for many more hours. I have to contact my urologist for a prescription for smaller ones.

    I used to take Elmiron and it didn't help so I stopped. My urologist told me to take it regardless because even if I didn't feel it was helping, it was helping to repair my bladder. I hate being on this much medication and to be honest I always forgot to take the elmiron because you have to do it on an empty stomach and I'm always eating.

    I do take it but not regularly, and I only do the instillations when I'm desparate until I get the new catheters. The irritation isn't worth the couple of hours of relief. I do have to say that the rescue instillations have helped me the most. I also want to change the lidocaine to marcaine which I have heard will last longer.

    Comment


    • #3
      Hi Laurarankel!

      Sounds like we are going through the same thing. I was doing fairly decently (not spectacular results, not crying pain) on oral elmiron, but my hair was falling out a LOT.

      So, at my doctor's recommendation, I've been trying elmiron instillations once a week for the past four weeks. I have not found them to be helpful yet, but I'm going to give it a few more weeks. After that, I'm not sure what I'll do!

      Best wishes, and hang in there.

      Comment


      • #4
        I have been getting elmiron instillations twice a week and taking it orally. The installs give me a bit of relief for a little while, a few hours. Today, I went in to get one and found I have a bladder infection, so I couldn't get it.
        The elmiron is making my hair fall out. I hate it, but I would rather have a chance at feeling better than worry over my hair. I have been in horrible pain for 7 months. I feel so hopeless about the treatments. Don't know what to try next.
        Good luck with it! I think you should go for the installs. They really are not that bad. I got used to having them done. I can't believe how many surgeries you've had. Is that 25 laparoscopies? I had one and it was awful.

        Comment


        • #5
          Hi Everyone!

          i apologize in advance for any misspelled words or bad grammar. to tired and drugged to worry about that right now. thanks to all of you who responded.

          Yes, I have had 25 surgeries for endo-24 were laparoscopies and 1 was a total abdominal hysterectomy w/left salpingoopherectomy (had the right side removed about 8 years ago). many other countless surgeries for ibs, gastritis, etc, etc. so here i am, with no female parts to speak of (except for what's left on the outside and it's nothing to brag about these days. the sick part is, the uro said that due to the severity of the IC, i have probably had it for at least 5 years or maybe even 10. it's very upsetting that went so long misdiognosed/undiagnosed. however you look at it, it's really pathetic. all i know is this website and support forum is awesome and unlike any we have for endo. i have learned more here in the last month and a half or so than i could possibly imagine. i know i'm the doctor's worst nightmare because most don't want to touch me with a ten foot pole due to the surgical history, but also because i have armed myself with so much information, i have them asking me questions half the time. so sad. anyway, i think i will take all of your advice and try the instillations. i am scheduling the first one for next week (i have doctors appt's and PT every day this week already).

          ok, so i guess i should ask for the marcaine rather than lidocaine. also, i see many of you are taking the elmiron orally as well as in the instillations, which is what the doc is suggesting. i will take your advice, since we as patients are really the experts. i just cut 16 inches off my hair and donated it to Locks of Love so if I lose much more, i will just have to deal. it's worth it to feel better. also, i have my first appt with the pain management specialist tomorrow. i have been searching for years and FINALLY found one who treats chronic pelvic pain.

          if you all were here i would personally hug each of you. i have hope even though i have really been feeling so hopeless lately. thanks again to you all. i will keep you guys posted. i am SO afraid of the catheter. i have had my fair share of things go wrong and just feel freaked out about the whole thing. but i know it will all work out in the end. if nothing else, i will have something to talk about later, right!

          talk to you all soon. just got back from vacation where i know i ate and drank things i shouldn't have, but man i am paying for it now. oh well, it was fun for the 10 days it lasted!!

          hugs to you all and i will talk to you all soon.

          love and wishing you all pain free days.

          laura r
          Last edited by laurarankel; 10-10-2006, 06:05 PM.

          Comment


          • #6
            Re: Rescues instillations with elmiron

            I am also having first elmeron instillation tuesday.can I drive home?taking urine b for procedure.

            Comment


            • #7
              Re: Rescues instillations with elmiron

              Meant uribel.

              Comment


              • #8
                Re: Rescues instillations with elmiron

                Originally posted by nmellana View Post
                I am also having first elmeron instillation tuesday.can I drive home?taking urine b for procedure.
                You should be able to drive home after an instillation. You may have some irritation, but not horrible. How far is your drive? If necessary, is there a restroom you can use on your way (unless it's a long drive you shouldn't need it.)?

                Donna
                Stay safe

                Have you checked the ICN Shop?
                Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                Patient Help: http://www.ic-network.com/patientlinks.html

                Sub-types https://www.ic-network.com/five-pote...markably-well/

                Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                [3MG]

                Anyone who says something is foolproof hasn't met a determined fool

                Comment


                • #9
                  Re: Rescues instillations with elmiron

                  Originally posted by ICNDonna View Post
                  You should be able to drive home after an instillation. You may have some irritation, but not horrible. How far is your drive? If necessary, is there a restroom you can use on your way (unless it's a long drive you shouldn't need it.)?

                  Donna
                  my drive home is about ten minutes. will I b ok? I appreciate all your help. doona. thank u so much. I am taking uribel bfor procedure...

                  Comment


                  • #10
                    Re: Rescues instillations with elmiron

                    A ten-minute drive should be okay. When I was having instillations at my doctor's office, I either went back to work across the street from his office, or if it was the end of the day, I did a drive of a little over a half hour home with no problem. Once in a long while I will read of someone having extreme pain from an instillation, but it's unusual. If they instill lidocaine or Marcaine along with it, that really helps.

                    When you have the instillation, it can help a lot if you relax --- if you tighten your muscles it will hurt more. What I do is to concentrate on my breathing slowly and evenly and consciously relaxing my muscles, laying as still as I can.

                    Donna
                    Stay safe

                    Have you checked the ICN Shop?
                    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                    Patient Help: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                    [3MG]

                    Anyone who says something is foolproof hasn't met a determined fool

                    Comment


                    • #11
                      Re: Rescues instillations with elmiron

                      Originally posted by ICNDonna View Post
                      A ten-minute drive should be okay. When I was having instillations at my doctor's office, I either went back to work across the street from his office, or if it was the end of the day, I did a drive of a little over a half hour home with no problem. Once in a long while I will read of someone having extreme pain from an instillation, but it's unusual. If they instill lidocaine or Marcaine along with it, that really helps.

                      When you have the instillation, it can help a lot if you relax --- if you tighten your muscles it will hurt more. What I do is to concentrate on my breathing slowly and evenly and consciously relaxing my muscles, laying as still as I can.

                      Donna
                      thank u sooooooooooooooooo much. iwill make sure they instill lidocaine or Marcaine.. u have been a tremendous help

                      Comment


                      • #12
                        Re: Rescues instillations with elmiron

                        hi donna

                        had the instillation yesterday. I did what you said. they also put the lidocaine on tip of catherter . solution was mixed with what you had said. upon insertion a little discomfort not bad. drove home know problem. took the uribel befor and after..my dr said I should not have any side effects. a little headache today. but I think its from the uribel. will have five more treatments.. he said there will b know har loss because it is not systemic... so I hope so thanks donna nancy

                        Comment


                        • #13
                          Re: Rescues instillations with elmiron

                          today I started to feel pretty lousy... lots of abdominal discomfort. slightly itchy and nausea. has anyone experienced this with elmeron instills?

                          Comment


                          • #14
                            Re: Rescues instillations with elmiron

                            It shouldn't happen with instillations, but I wonder if it might be partly stress related? Stress can do some awful things to us.


                            Donna
                            Stay safe

                            Have you checked the ICN Shop?
                            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                            Patient Help: http://www.ic-network.com/patientlinks.html

                            Sub-types https://www.ic-network.com/five-pote...markably-well/

                            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                            [3MG]

                            Anyone who says something is foolproof hasn't met a determined fool

                            Comment


                            • #15
                              Re: Rescues instillations with elmiron

                              anything is possible... I cant thank u enough for your help donna..... I almost feel like I took it orally... I has this effect when I took it orally.... but hopefully by tomorrow its gone. dr wanted me to come evey week. but I asked him if I could do every other week. if going every other week still gives me symptoms I will go every three weeks. will it matter?

                              Comment

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