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  • Instills Burning???

    I had my 2nd instill today and scheduled for 4 more over the next 2 weeksfor a total of 6. The first was just lidocaine and sodium bicarb. It burned worse that afternoon and the next day. Today they added 1 capsule of Elmiron and it burned immediately when the solution hit my bladder but of course subsided due to the lidocaine. Here I am, 4 hours later and burning as before.

    I just wonder if the sodium bicarb or the lidocaine is irritating me worse. I know one thing, after they do the instill and before I can reach my car, I am slightly lightheaded from the lidocaine. The Elmiron made me a little nauseous with a little headache also. I can't take it orally because it givesme horribly nausea. I feel ok now..no dizziness or nausea. Also, how long does it take for an Elmiron instill to work? What would they mix it with if they left off the lidocaine and/or sodium bicarb?

    Another thing, I called yesterday and asked if they could use Kenolog today. I use a kenolog/sodium chloride solution for nasal irrigation and it works beautifully for irritation & inflammation of the sinuses. It can be used for the bladder too as I have read. When I got there today, the nurse told me "No, the doctor does not want to use it" I could not see him and she gave me no further explanation. I want to as least try it since it's something I can tolerate and I feel like it would help me.

    I am very frustrated with this and very tired...going on 4 weeks of a constant flare.

    Update: Elmiron made me very, very sick as the day went on. Ended up being an "All Nighter". My GI tract is still recovering. Ironically, today (2days after the instill) my bladder feels better. It's like a sick joke! Going back to speak with the Dr. next week to see what to do with my bla bla now!
    Last edited by Flowerchild; 03-12-2011, 06:26 AM.
    I'm Perfectly Imperfect and Praying for Remission

  • #2
    I don't know why they won't use Kenolog. I asked my uro to use it because my old uro used it and he had no problem adding it to the mix. I really think it helped. Try printing out some info on it & bring it with you or call & talk to the nurse. Hope you have some success!
    MelindaP

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    • #3
      I had a lot of burning when using lido and sodium bi carb so my Dr switched me to marcaine. I no longer use the sodium bi carb and don't have the burning anymore. I have been adding my elmiron to my instills because I was having a bad flare with a lot more pain than I usually do. I find I have to lay down for a bit with the elmiron or I do get a little burning, only for a few minutes if at all though.
      Link to the patient information, everything from What is IC? to Disability
      http://www.ic-network.com/patientlinks.html

      American Urological Association Clinical Guideline
      Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
      http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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      • #4
        Haven't had them yet but my UG uses kenalog, marcaine and heparin in his. If I recall correctly he told me the kenalog helps with inflammation.
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

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        • #5
          Your doctor is probably one who doesn't use Kenalog. I went to a uro and told him I can't do sodium bicarb because it burns so much and he told me that was the only way to get it into my bladder and I had to do it. He would write out pain meds for me if I didn't try this with the Elmiron instil. So, like you as soon as it hit my bladder it started burning. I said, "It is really burning." I was told that would go away. Well it didn't I peed three times before the burning stopped. Like you, I get a systemic effect with Lidocaine too.

          Since reading sailawaygrl, I would be willing to try Marcaine. I think Kenalog would be good to try too. One other lady one here had good success with this in her instil.
          Teresa

          We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

          Comment


          • #6
            Sometimes instillations do cause pain for a while, but help after several are done. Just be sure to share with your doctor that you are having the burning.

            Warm hugs,
            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.

            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

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            • #7
              How long do you stick to a solution which makes your bladder worse until it might get better?

              I just hate I can't do the Elmiron. I wonder...with the lidocaine numbing me, it takes almost 2 hours before I can pee it out the solution. Without the lidocaine, if I only hold it for 20 mins, would the elmiron affect me the same way? Could I have gotten to much absorbtion before which made me so sick?

              I'm to see the Dr. again this week and talk. I hope he will be willing to try different solutions until we hit on the right one or be willing to make adjustments in some way. This Dr. rushed me through my first appt with him and didn't let me hardly say a word. I hope he doesn't "Dismiss" me due to all my peculiar and vast sensitivities and allergies. I have had that happen before.

              Thanks for everyones suggestions. I really appreciate all of you
              I'm Perfectly Imperfect and Praying for Remission

              Comment


              • #8
                I would talk to your doctor about being lightheaded after the instillation. That sounds suspicious to me. I have not had this problem and I don't think I have read any post that talk about being lightheaded after an instillation. Being able to hold an instill for 2 or more hours is pretty common. Dr. Dell says there is no time limit for holding the instill. He says most of the effect occurs in the first 20 mins. He does ask you to hold it for 20 min BUT do not try to hold the instill if it is painful. I usually do instills at night so I can get a good night's sleep. I usually hold the instill for 6-8 hours.

                I have read several post where people that have sensitivity to sodium bicarbonate use sterile water instead.
                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


                • #9
                  I did see the Dr. again today and the appt went better..not as rushed. I had another instill with 1/2 dose of lidocaine and kenolog. I didn't get lightheaded and had no burning when it was injected in the bladder and 4 hours later I'm good so far. I still have some mild burning as before but it's not worse and I hope it will get better as the day goes on. He said the sodium bicarb can cause burning and I think he was right. With 1/2 dose of lidocaine, I could hold it 1 1/2 hours which should be sufficient.

                  He rarely uses kenolog or steroids in instills and said he found that it didn't help but I told him I wanted to give it a try anyway. Can't be any worse that the reaction form the elmiron which rocked my GI boat like crazy!!!still getting over it.

                  He also wants to do a hydrodistention at some point. UGGH, I'm so nervous about that. Oh my gosh, what if a hydro makes it worse? If this is done under general anesthesia, I can't do it. I don't do well with that at all. Can a hydro be done with sedation..like when you get a colonoscopy? I'm ok with sedation.

                  Thanks girls for all your suggestions and input!
                  Flowerchild
                  I'm Perfectly Imperfect and Praying for Remission

                  Comment


                  • #10
                    I've had two (with lidocaine, sodium bicarb, and elmiron) now and felt light-headed both times. Not bad enough that I needed to lay down. More like a very calming slightly woozy type of feeling.
                    So far I've felt really good the first day (like don't have to pee for 4 hours after the procedure), worse the following day, and then better. My GI stuff has been not so great, but that could be from the hydroxyzine I just started. Or something else. My IBS can flare for no reason I can see (even though I analyze it to death every single time).

                    So what's the deal with kenalog. I haven't seen it mentioned around these parts before and I'm curious.
                    Mom to two littles (remissions while pregnant/breastfeeding)
                    Sufferer since mid-90s
                    Finally dx'd properly much later

                    Comment


                    • #11
                      Doing a tad better with Instills

                      The Kenolog & Lidocaine instills are helping at last. I hope it continues. If it weren't for the spring allergies, I might be doing even better! I've had 2 of these so far. I asked for the Lidocaine to be bumped up to the usual dose since the 1/2 dose didn't seem to help as much. I was not light headed either. I spoke with my allergist and he said I needed to have my adrenal levels checked periodically if I do Kenolog frequently or long term.

                      It has made my IC much more tolerable this week...I actually felt like going to the movies last night and piddled in the yard yesterday. (Duh..was that stupid...exposed to more allergens!)

                      My allergist also gave me samples of Singulair but I haven't tried it yet. I thought it would be nice to have a weekend w/o a drug reaction! He told me of all the antihistamine types, Singulair would be the best for the bladder if I can tolerate it and don't have an issue with the ingredients. I used to take Zyrtec but there's something in it that flares me now. Anyway, he knew quite abit about IC and it was helpful to get info from another perspective. How do others fair on Singulair...side effects and IC relief?

                      I hope the IC Dr. will allow me to do instills at home soon. I'm up for it. Just praying the Kenolog will get me thru Spring and continue to offer some relief.

                      Another good thing...I've lost 3 lbs with the strick diet
                      I'm Perfectly Imperfect and Praying for Remission

                      Comment


                      • #12
                        Glad your doing better! I have had 2 different Uro's use Kenolog in my instills (2nd uro I had to request it since they usually use heprain). I think it really did help me too. I guess you have to try different "cocktails" to see which works the best for you. I take 25mg a night of hydroxizyne for my allergies, but I am not sure how much it helps since I have been in a "urethra" flare since last week. I also blame the seasonal change. Hope you continue to feel better!
                        MelindaP

                        Comment


                        • #13
                          Atarax (Rx) is the strongest antihystamine you can get. It is available in a generic. I use it because I have problems sleeping. It effectively for sleep,allergies and IC. Dr. Dell AND my allergist agree there is empirical evidence based on valid and reliable research showing that IC is affected by allergies.
                          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

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