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  • They stopped working for me...

    I'm extremely upset with my instills right now! For about a year, they worked REALLY well. I sometimes got up to 5hrs of relief from one. Then I started having all these UTI's (which allegedly are NOT from cathing frequently... the bacteria type was unusual) and we figured out I have reflux.... adding to and causing me to have infections. To make the infections less painful, I upped my water intake from maybe around 30 oz a day to about 60 oz. About two months ago the instills just STOPPED working. They gave me only 10-20 min relief and then afterward I HURT MORE!! The heparin causes my bladder to bleed excessively.
    So when I went in last time to tell my doc they'd stopped working he thought it was because I was deconcentrating my urine... the medications were not as effective. I tried reducing my water intake... but it has no effect upon my medications... and I just can't drink that little. It puts me in a large amount of pain, and I'm very thirsty all the time. I have to continue doing the instills 3x a day... "Even when I don't want or need to"... and I'm frustrated because I have no idea why it stopped working for me. Has anyone else had issues with medications no longer working? Did you ever get them to work again?
    I was so close to remission.... and now I'm even further. I'm terribly dissappointed because it was the best tool in my toolbox, and now I need to go on to other more extreme treatments.
    "It's a little like wrestling a gorilla. You don't quit when you're tired, you quit when the gorilla is tired." :woohoo:
    -Robert Strauss

    Info:
    20 year old toilet slave
    Professional Bed Wetter
    Zillions of "UTIs" since I was 3 yrs old
    FINALLY diagnosed with I.C. 4/04
    Diagnosed with Grade IV Kidney Reflux 1/07

    Current Sitch:
    My InterStim trial has started... and so far IT'S WORKING!!

    Meds:
    For physical:
    Lidocaine instillations 3x per day
    Lidocaine urethral suppositories prior to cathing
    Elmiron
    Vicodin
    OxyContin
    Aleve
    Urelle
    Prelief
    Macrobid
    Atarax
    Estrace
    Uroxatral

    For Emotional:
    Lamictal

  • #2
    I would say that if they are not giving you relief anymore at all, I would not continue doing them. Does your doctor have any other treatment options? I hate this disease. It is one of the worst things to have. I have other health issues that are debilitating, but this one ices the cake as far as pain wise. I hope you find something that works for you.
    Jen

    Comment


    • #3
      Is there a possibility you have developed an allergy to latex? If you're using latex catheters, you might want to consider changing to non-latex.

      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      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.

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      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


      • #4
        I had been using lofric (non-latex) 10fr caths.... two weeks agos I switched to the pediatric 8fr lofrics. It makes the cathing ten times less painful... but has no impact on the duration of the instill. I also tried the instill without the heparin... which added maybe ten min of relief, and burned less upon urination. But they still don't work the way they used to. I tried taking baths prior to doing one, which doesn't have an impact. They still make me hurt more than I did prior to the treatment. I wonder if the manufacturer added something new into the lidocaine, or the sodium bicarb (but they're supposed to be "preservative free")? I've also decided I'm not going to do three anymore... just two. I almost feel addicted to them tho, because I continue to do them expecting different results and even though they hurt I still continue desperately hoping "Maybe it'll work this time". It makes me angry that my doc ignored the fact that they hurt, and JUST AREN'T WORKING ANYMORE.... and decided that I still must continue with them despite that I don't want to. Maybe something in my body changed that impacts the effect, we've noticed that my bladder has started to increase pressure... or maybe one of my UTI's did some damage that hasn't repaired yet.
        I'm just frustrated because I can't figure it out, or reverse whatever happened so that they'll work again.
        "It's a little like wrestling a gorilla. You don't quit when you're tired, you quit when the gorilla is tired." :woohoo:
        -Robert Strauss

        Info:
        20 year old toilet slave
        Professional Bed Wetter
        Zillions of "UTIs" since I was 3 yrs old
        FINALLY diagnosed with I.C. 4/04
        Diagnosed with Grade IV Kidney Reflux 1/07

        Current Sitch:
        My InterStim trial has started... and so far IT'S WORKING!!

        Meds:
        For physical:
        Lidocaine instillations 3x per day
        Lidocaine urethral suppositories prior to cathing
        Elmiron
        Vicodin
        OxyContin
        Aleve
        Urelle
        Prelief
        Macrobid
        Atarax
        Estrace
        Uroxatral

        For Emotional:
        Lamictal

        Comment


        • #5
          I really hope if the instills aren't working that you will be able to get IC under control some way soon.
          TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
          My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

          Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
          Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
          I post to encourage and offer total support for rescue instillations.
          Find me on facebook: L. Clark Thomas
          Louann

          Comment


          • #6
            Hi.
            Maybe you body has just became immune to the instills, kind of like when you take a med for a long time, sometimes they loose their effectiveness.
            I do think your doctor should do something about this though since you are still in so much pain. I hope you get some relief again soon.
            Jen

            Comment


            • #7
              I don't have any answers for you but just wanted to say I'm sorry this is happening to you. Sounds like the pits. I sure hope you find some relief soon.
              ~Laura

              There can not be a crisis next week. My schedule is already full.

              March 2006 IC tested positive

              current treatments for IC:
              Zoloft 100mg
              Prelief
              tramadol hcl 50mg (4-8 per day)
              diphenhydramine (1 nightly)
              elavil 25mg, Just started Nov 11

              additional meds for pain if needed:
              darvacet
              loratab
              percocet
              tried Elmiron for over year and didn't see much of a change, gained weight

              Also take Lisinolpril for high blood pressure

              Other conditions:
              IBS '93
              depression '94
              stomach ulcers '95
              Mitral Valve Prolaspe Syndrome '01
              Migraines since childhood
              Chronic Fatique '03


              It's not the number of years in your life that matter but rather the life in your years.

              Comment


              • #8
                Well the good news is... I'm going to see my primary care doc to play around with my pain meds. While he may not quite understand what I'm going through, he has enough compassion to treat me. I now have a bladder infection again... I can smell it... and wow is it nasty. So I've decided not to do any instills until I get rid of the bacteria. For the future I'm also not going to give up on trying to get the instills to work again, I've decided to move on. I'm trying InterStim next month, so that may help me get this monster under control. I'll officially give up trying to get them to work when a doctor says to, or I figure out why they're not working but can't fix it. I do suspect that my has become immune tho.... because just around the same time, uristat also stopped working for me too. The two biggest weapons I had in my arsenal.... I just have to remember and wait for others treatments to help.
                "It's a little like wrestling a gorilla. You don't quit when you're tired, you quit when the gorilla is tired." :woohoo:
                -Robert Strauss

                Info:
                20 year old toilet slave
                Professional Bed Wetter
                Zillions of "UTIs" since I was 3 yrs old
                FINALLY diagnosed with I.C. 4/04
                Diagnosed with Grade IV Kidney Reflux 1/07

                Current Sitch:
                My InterStim trial has started... and so far IT'S WORKING!!

                Meds:
                For physical:
                Lidocaine instillations 3x per day
                Lidocaine urethral suppositories prior to cathing
                Elmiron
                Vicodin
                OxyContin
                Aleve
                Urelle
                Prelief
                Macrobid
                Atarax
                Estrace
                Uroxatral

                For Emotional:
                Lamictal

                Comment


                • #9
                  You know, there are several different "cocktails" that can be used for instillations. I don't know what is in yours, but maybe your doctor and you can try changing around the actual meds, or the amounts or the proportions.

                  I'm so sorry they've stopped working for you; I rely on them so much! I'm afraid something like this can happen to anyone.

                  Good luck in your journey. I've recently added both elavil and cystaQ to my "arsenal" and I'm feeling pretty good. My doctor actually thinks the cystaQ is doing for my bladder lining, what the elmiron has not managed to succeed in for two years and a half. So I may stop elmiron. It's all a question of experimentation and willingness to be creative -- I am fortunate to have a medical team who like to think outside the box, but even so, everything takes so long to work, to even know if it's helping. This is the most frustrating aspect for me.
                  Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                  Wishing you happiness and good health, and all the best out of life.

                  Peace, Carolyn
                  ___________________________________________________

                  Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                  On the Beach with IC

                  Comment


                  • #10
                    I dont know what to think really. There are a few things that come to mind, but I dont know for sure either. But, I'll throw them out there, just in case. First, I wonder if since you have an infection now, if perhaps it has been brewing for a while and remained at a low level but has now gained momentum as it has gone untreated. This is one explaination, as the instills not only dont work for infections, but actually can make them worse. My Dr. doesnt ever want me doing an instill when I have an infection. Just a thought.

                    Another thought is that as others suggested, perhaps the formula just needs tweaking a bit since you have been doing the same thing for a while. For instance, if you have been using Marcaine, you could try switching to Lidocaine for a while. If you have not been using Kenolog (a steroid to help with inflammation), you might try adding it in to some instills and see if it helps. You might also try adjusting the amounts of the meds. (All under the direction of your Dr, of course). There are other adjustments that could be made too, but those are just off the top of my head.

                    Another possibility, have you started any other meds or supplements recently? If so, it may be time to investigate the possibilty of one of those causing you to flare. Or it could be a new additive, coloring or preservative that has recently been added to one of your regular meds, unbeknowanst to you. You could call your pharmacist and have him/her investigate this possibilty for you. Forumlas are tweaked and adjusted all the time and different fillers added that we are unaware of, but that can suddenly send IC patients into a tailspin or perpetual flare and we have no idea why. It would definately be worth looking into.

                    By the same token, all your "stand by" foods that you have been eating/drinking for a while that have not caused problems need to be reexamined, as the manufacturers may have also made a change to the ingrediants and added a chemical or other ingrediant that you are sensitive to. If you have not looked at the ingrediant list since you first began purchasing the product, it is very possible a change could have occured since then so that a food that was once safe for you has become no longer safe.

                    Lastly, it might be worthwhile to look into things in your home such as your clothes, laundry detergents, a new perfume or bath product, cleaning products, new carpet or paint or other things in your enviornment that you might be sensitive to (or that could produce fumes that you are particularly sensitive to.

                    I hope that whatever the cause turns out to be, that you get some pain relief soon. I use the instills too, and would also be lost without them. So, I hope that if the instills do turn out not to be working (and that it is unrelated to anything else), that your Dr. will work with you and try to make some adjustments to them and that they will start working for you again.

                    I hope that you feelbbetter soon!

                    Hugs,
                    Amy

                    Comment


                    • #11
                      I currently do a cocktail 4ml of 4% lidocaine, 4 ml of sodium bicarb, and 4 ml of heparin... all are supposed to be "preservative free". The uro that has been prescribing my instills is still Dr. Parsons, and he has blind faith in his research that backs his particular cocktail.... he's also pretty stubborn. Thanks for the ideas.... I will call the pharmacist an investigate to possibility of my meds fillers having been altered. I think that's very likely.... and the search begins!! I also think that tweaking the formula maybe be successful... although it may take some real arm twisting to get it done. I just switched to a Dr. Albo... and he may be more willing, than Parsons, to play around with it. I've also really wondered if I don't have a UTI "hiding".... while I am on constant low dose anti-biotics... my urine has had the tell-tale ecoli smell...but the several cultures I have done have come up negative (which is a complete shock). While I can't quite prove it... it's currently my front running theory on why the instills have stopped.
                      Once again, thanks for the ideas on how to move forward... maybe I'll figure this out just yet.
                      "It's a little like wrestling a gorilla. You don't quit when you're tired, you quit when the gorilla is tired." :woohoo:
                      -Robert Strauss

                      Info:
                      20 year old toilet slave
                      Professional Bed Wetter
                      Zillions of "UTIs" since I was 3 yrs old
                      FINALLY diagnosed with I.C. 4/04
                      Diagnosed with Grade IV Kidney Reflux 1/07

                      Current Sitch:
                      My InterStim trial has started... and so far IT'S WORKING!!

                      Meds:
                      For physical:
                      Lidocaine instillations 3x per day
                      Lidocaine urethral suppositories prior to cathing
                      Elmiron
                      Vicodin
                      OxyContin
                      Aleve
                      Urelle
                      Prelief
                      Macrobid
                      Atarax
                      Estrace
                      Uroxatral

                      For Emotional:
                      Lamictal

                      Comment


                      • #12
                        Hurry 4 Peas your PM box is full

                        Hi there,
                        Tried to PM you with some info that I thought might be helpful to you, but your box is full. I'll re-send when there is room.

                        Comment


                        • #13
                          Janet...Thought I'd let you know that the last activity for this member was in 09-03-2007.
                          Sharon

                          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                          Where I can be found most days.



                          Link to the ICN Patient Handbook:
                          http://www.ic-network.com/handbook/

                          Link to the IC Diet:
                          http://www.ic-network.com/diet/


                          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                          Comment


                          • #14
                            Sharon A

                            Sharon,
                            Thanks. I was doing a search re cleaning products causing flares, found her and wanted to PM her about Dex. Thanks for letting me know.

                            That was really considerate that you took time to look up her last activity and let me know.

                            Take Care,

                            Comment


                            • #15
                              I'm really glad you posted this topic because I went to a first time doctor today who was extremely rude to me. Without writting a book, I have been through the whole 9 yards and back, and two years ago I found a sympathetic urologist that supported my need for dissability. Not all treatments work for everyone!!

                              So I go to the new doctor today and see him for an OB/GYN reason (not urological). But he turned the whole appointment into how he plans to get me off of SSD in 12 weeks and wants to start using instillations on me (which have already been tried). Elmiron doesn't do a darn thing for me, but he claims that "I need to be back on that too" even though it gave me two years of pure diarreah and almost cost me my job. The IC diet doesn't do a darn thing for me but he kept pushing it on me anyway. I've had 17 years of treatments and aggravation with this disease, and he was telling me that I was "curable" and acting like this was my first time hearing about IC. He was a real jerk. SSD is NOT easy to get on and I was investigated thouroughly. It's not like they just give you a ticket for money. Apparently this doc I went to today was clueless.

                              I'm just glad you posted this topic. It confirms what I felt today about this arrogant doctor. I'm sorry things aren't working out for you. Hugs!

                              Comment

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