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  • #1

    self instills

    Hi ladies I have a question.

    I have been doing the Heparin Sodium Barc Lidocaine since 2003 I do it 2 a day and for some reason the last 6 months it really has not been helping I am on Elmiron 400mg a day as well, so what happens is that I do the mixing and self cath and with in a few minutes I have to pee it out right away, I never had that response before it would always feel better right away? does anyone have any idea as to what is going on?
    Blessings,
    Ruth
    Tags: None
    • #2
      Is there any possibility one of the ingredients has become contaminated? When I self instilled the heparin was in individual dose bottles, but the sodium solution came in a good sized bottle and I had to pour it into a small container.

      Donna
      Stay safe


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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

        • #3
          Hi Ruth,
          Have you checked the heparin lot numbers to see if it's a recalled batch? I had terrible problems with my instillations several years ago & the heparin had been recalled. Last Spring I had more blood than usual in my urine and had also been using another batch that got recalled later! That time the company insisted no one had had problems & it was a problem with their paperwork that caused the recall, but I think it's strange I had new symptoms with that lot number batch. You can have the pharmacy check for you on the lot numbers--that's probably the fastest way to find out, but you can also do a google search & FDA website check for heparin recalls. I'm sorry, I can't remember what brand it was last time it went bad....

          Other than that... Have you changed lubricants? Catheter size? Anything else that might account for the problem? Brand of Heparin? (Some are preserved with alcohol instead of methylparaben) You might also check with the doctor about switching to Marcaine instead of Lidocaine? I always got a burn from Lidocaine, but not Marcaine.

          I hope you find some relief soon, it's maddening when something that's supposed to help doesn't work right...
          Kadi

          -------------------------------------------------------------
          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.
          ------------------------------------------------------


          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
          Source - Pinterest
          "

          Current treatments:
          -IC diet
          -Elavil 50mg at night
          -Continuous use birth control pills (4-5 periods/year)
          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
          -Pyridium if needed,
          -Pain medicine at bedtime daily, as needed during the day several times per week
          -Antibiotic when doing an instillation to prevent UTI
          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
          -Dye Free Benadryl 50 mg at bedtime
          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
          -Managing stress= VERY important!
          -Fur therapy: Hugging the cat!

            Comment

            • #4
              So sorry Ruth. Don't know. Could it be that your body has built up a resistance? What do you all think about this? Know they work wonders for so many, but do some become immune to them? Curious.

              You need to talk to your doc for sure. Hope you get to the bottom of it and find a solution. Feel for you. Yikes. Hope you feel better really soon. Tell your doc it just aint't working anymore, maybe a dif combo? Press your doc and do your research before you go. This site has a lot of info and different things work for different people. Hoped 2011 would be the "odd" year that cured this thing. Maybe it will Jill, wife of Bob

                Comment

                • #5
                  Heparin --- Short Shelf Life

                  Hey there Ruth!

                  For the past two years i have been doing the instills at home with the Sodium Bicarb, Lidocaine and Heparin.....using a 10F cathether, and 2% Lidocaine gel on the cath to help numb my urethra. I was having my pharmacist mix these for me, until recently, when the instills skyrocketed up to $30 per instill b/c of my insurance. Sheesh.........and i could't afford that.

                  I see a well known IC Specialist here in NC and he told me that the Heparin is what is so expensive, but that it also had a very short shelf-life (not sure if that happens when mixed with the other two or just in general). But, he's "the man" around here, so i just went with it.

                  At my appt two weeks ago, he wrote me a prescription for me to mix these at home from now on, as needed.......he took the Heparin out of the mixture, b/c of the short shelf life and because it is soooooo expensive. I am still using the Sodium Bicarb and Lidocaine, but he replaced the Heparin with Elmiron. Also changed me to an 8F cath, b/c the 10F was killing me. 8F is much smaller and more comfortable.

                  You may want to ask your doc about that.....just wanted to share what my IC Specialist told me..........hope you are feeling better!!!! And message me if u have questions!


                  Meredith
                  Dx's: Moderate IC, PFD, Infertility, ADHD, Anxiety/Depression.
                  Current Meds: Zoloft, Adderall, Seroquel, Gabapentin, Hydroxyzine, Claritin, Pyridium, At-Home Instills, Macrobid, Lidocaine Gel
                  Meds that Didn't Help: Ultram (Severe Retention), Tylenol 3 (Itch), Paxil, Effexor, Cymbalta.
                  IC Handbook Link: http://www.ic-network.com/handbook/

                    Comment

                    • #6
                      This is a question that I have never read a thread about. The expriation date should be correct. I have not had this problem.
                      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

                        • #7
                          self instills

                          Thanks ladies for all the feed back only here I can come and share my IC stuff and know that you guys understand.

                          Yea I have been mixing the stuff myself cuz of the cost? I am going to ask my dr if I can do Elmiron instead of Heparin?
                          Blessings,
                          Ruth

                            Comment

                            • #8
                              self instills

                              Hey Kadi are you using Dr parson cocktail?
                              Blessings,
                              Ruth

                                Comment

                                • #9
                                  HI Ruth,
                                  I'm using 10cc Marcaine, 5cc Sodium Bicarbonate, 20,000 units Heparin, and 20-30cc of sterile water. The sterile water is to give me enough volume to void the solution after an hour.
                                  Kadi

                                  -------------------------------------------------------------
                                  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.
                                  ------------------------------------------------------


                                  New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                                  Source - Pinterest
                                  "

                                  Current treatments:
                                  -IC diet
                                  -Elavil 50mg at night
                                  -Continuous use birth control pills (4-5 periods/year)
                                  -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                                  -Pyridium if needed,
                                  -Pain medicine at bedtime daily, as needed during the day several times per week
                                  -Antibiotic when doing an instillation to prevent UTI
                                  -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                                  -Dye Free Benadryl 50 mg at bedtime
                                  -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                                  -Managing stress= VERY important!
                                  -Fur therapy: Hugging the cat!

                                    Comment

                                    • #10
                                      self instills

                                      Thanks Kadi
                                      Blessings,
                                      Ruth

                                        Comment

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