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Is 40,000 units of heperin alot??

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  • Is 40,000 units of heperin alot??

    Hi ladies.
    My new urogyne gave me the stuff to do my instills at home once a week. He has me using only heperain,saline, and lidocaine.
    I am suppose to use 40,000 units of heperain(4ccs), 30ccs of saline, and 10ccs of lidocaine.
    Does 40,000 units of heperin sound like to much? I hear others using only 10,000 units. I had one instill this past Tuesday and I have to say I had more pain afterwards and no pain relief at all. I also had spasms, which I did not have before I had the instill.
    I know that some say it takes time to get relief, but is it normal to feel worse afterwards?
    He wants me to do them once a week. I was thinking about doing it today instead of waiting for Tuesday because I rather do it on the weekends rather than the weekdays, so I figured I would do it every Saturday. I just wonder since I had one 4 days ago, is it to soon to do it again , or do you have to wait out the whole week. I dont think it should matter really, but I am worried I will feel worse again. Also, I thought 40,000 units of heperin was alot. Any ideas or replies are greatly appreciated. Thanks.
    Jen

  • #2
    I use 10,000 units of heparin, though I have heard of patients using up to 40,000 units. Check with your doctor on whether it's ok to go ahead & do the instill or whether you should wait. I do instillations 3x a week if feeling ok, up to daily if flaring. But you're using a lot more heparin, so ask your doctor...

    No sodium bicarbonate with your lidocaine?
    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!

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    • #3
      Hi Kadi.
      All he uses in the instills is the heperin, saline, and lidocaine. When I did the instills the other urogyne had me doing, she was using marcaine,heperin,biocarbonate,kenalog. They seemed to help more with the pain, but they made me have retention. The reason I stopped seeing her is because she was not willing to work with me. She belived that what works for one works for all.
      What does the sodium biocarb do anyhow? I thought it was like an antacid or something. Maybe I should wait until Next Friday to do the instill. I just dont want to do it during the week as I always have a bad reaction it seems and at least on the weekend I am home and have my hubby here in case something does go wrong. Though I dont think it would hurt, as I have heard of people doing them every other day.
      I just thought 40,000 units was alot. I would cut it in half if I could, but not sure how I would do that. Plus I would have to talk to the doctor first before I started cutting anything down I suppose.
      Thanks for the reply. Do the heperin, saline,lidocaine instills work as well as the ones with the biocarb added? I was also thinking about asking my urogyne if he would be willing to add a steroid. I think the steroid is what really would help any inflammation.
      Jen

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      • #4
        I've been using 40,000 units of heparin just about from the beginning.

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        • #5
          Waterflow, how many times a week do you do the instills? What else do you use in your instills?
          Jen

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          • #6
            I've been having them done once a week for almost the 8 years. Only use heparin/lidocaine and saline. I was doing them everyday at home but can't afford to the lidocaine to do it that many times. So, now I do it about every two days.

            I started out with 10,000 units then to 20,000 which did nothing too. Then the 40,000
            Last edited by waterflow; 04-21-2007, 02:18 PM. Reason: edit

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            • #7
              I use 40,000 units, on average 3x a week.
              ****
              Jen

              *Diagnosed with severe IC in 2004
              *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
              *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
              *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

              **I am not a medical authority nor do I offer definitive medical advice. 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.

              Comment


              • #8
                I also use 40,000 units and do them about 3 times a week. But, you really need to check with your Dr. before making any changes to things. You never know which change will upset the whole apple cart.

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                • #9
                  Thanks Ladies for all the advice.
                  Jen

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                  • #10
                    I use 10,000. If you are concerned maybe you could ask your MD what is the advantage of using 40,000 than a lower dose. From what I understand heparin doesn't get into the blood stream from being instilled into the bladder. It just makes the bladder more receptive to the lidocaine and sodium bicarbonate helps infuse the lining.
                    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

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                    • #11
                      Jen,
                      I actually just found out what the sod. bicarb does, as i had the same question. from what i have read, it helps dmso and/or steroids to work better. i totally forget where i read that. it may have been somewhere on this website or i did an internet search. it is also alkalizing.
                      i currently am doing 10,000 of heparin, solu cortef (although i was told by my pharmacy it's on back order), and sod. bicarb. i did not have the solu cortef (the steroid) at my last instill and had more frequency and discomfort. i find it to be really helpful. i think i am trying kenalog until solu cortef becomes available here again. oh, and my heparin comes in two 5,000 unit bottles.

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                      • #12
                        Thanks ladies.
                        L. Thomas, I was just wondering, what does the heperin do to make the bladder feel better, does it have antinflammatory actions? I am only using heperin,lidocaine, and saline. My doc does not use the sodium biocarb. I am not sure why my doc has me using the 40,000 units of heperin, but I will ask him when I see him next.

                        Lynn15, I use to do the instills using the kenalog with my last urogyne also. She used a different mix of meds though. She used heperin,marcaine,kenalog and biocarb. I had a reaction to those meds or one of them as I would get bad retention from it and and not be able to pee out the stuff. With the instills I use now with the heperin,lido, and saline, I am able to pee the stuff out. Not sure what caused me this reaction with the other instills. I think the steroid is a good thing to add to the mix though. My current urogyne does not use steroids in his insitlls, but if I wanted to try it again, I am sure he would have no problems letting me. He seems very open to suggestions.
                        Anyhow, thanks for the replies. Hope you all are feeling well today.
                        Jen

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