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  • Sodium Bicarbonate shortage?!

    Hi all,
    My MD is ordering the ingredients for home instillations. I work in a hospital and know that there is a Sodium Bicarbonate shortage, so trying to find a pharmacy that carries everything I need has been exhausting!! Does anyone else have problems with obtaining the rescue instillation ingredients? (Sodium bicarbonate, lidocaine, solucortef, heparin).
    Thanks!
    Please do not take my responses or posts as medical advice. I am learning too!
    Diagnosed in 2006 (But have had symptoms since 1987)
    Endometriosis/Ovarian Cysts/Ovarian tumor--total hysterectomy
    Multiple hospitalizations with pylonephritis
    "thousands" of "uti's" (or least it seems like it)
    For my IC/Pelvic floor dysfunction:
    Botox injections in pelvic floor
    Elmiron
    Singulair
    Nortriptyline
    Oxybutynin
    Valium
    Skelaxin
    UTA
    Prelief
    Physical Therapy twice a week
    TENS unit
    Baking Soda
    IC Diet
    I also have a Lapband, so my diet is even MORE limited!

  • #2
    Yes, I have not been able to get any from a pharmacy since February! My doctor's office has given me bottles from their stock for the last 5 months, but they now don't have any more to give me and they say they can't order any either. Same boat as me. I tried every local pharmacy and my mail order pharmacy - none to be found anywhere.

    So, I found a fairly local sterile compounding pharmacy & my doctor just gave them the prescription. Then there was a lot of discussion. They wanted to put alcohol in it as a preservative! Imagine the ouch. My doctor had to promise them I would keep it in the fridge after opening it & would use it up within a few days. It should arrive by mail next week. I'll let you guys know how it works out...

    I think sterile compounding pharmacies might be it for awhile. The shortage has no end in sight for the 8.4% sodium bicarbonate that I use...
    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


    • #3
      Thanks for the reply. The one pharmacy I spoke with that COULD get it said they would have to order 50 vials at a time. How many vials do you use in a years time?
      Please do not take my responses or posts as medical advice. I am learning too!
      Diagnosed in 2006 (But have had symptoms since 1987)
      Endometriosis/Ovarian Cysts/Ovarian tumor--total hysterectomy
      Multiple hospitalizations with pylonephritis
      "thousands" of "uti's" (or least it seems like it)
      For my IC/Pelvic floor dysfunction:
      Botox injections in pelvic floor
      Elmiron
      Singulair
      Nortriptyline
      Oxybutynin
      Valium
      Skelaxin
      UTA
      Prelief
      Physical Therapy twice a week
      TENS unit
      Baking Soda
      IC Diet
      I also have a Lapband, so my diet is even MORE limited!

      Comment


      • #4
        I do the instillations at home 2x a day (formula=15cc sterile water, 10cc bupivacaine, 5cc sodium bicarbonate, 20,000u heparin).
        I use six 50cc bottles per month, so a year would be 72 bottles.

        Could you please send me a private message with the name & phone number of the pharmacy? It might be a better option than the one I have now (or maybe not)...

        My insurance will cover the sterile compounding pharmacy I found, but I have to file a reimbursement claim and no one seems to know how much they'll reimburse. The cash price for 18 bottles will be $135, which I can live with. Hoping the insurance will cover more, obviously, but at least I can manage this as is.
        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


        • #5
          About a year ago Dr. Dell stopped putting sodium bicar in my instills. His research showed it didn't make a difference. He also said too many insurances don't cover it. Now the heparin...that's a totally different story.
          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
            Thanks for the heads up on this, not sure whats going to happen when I go to the Uro tomorrow but I do a compounding pharmacy about 20 miles away so if this happens to be the case I know where to go and I know thy're good, thy're in my home town and family ran pharmacy that's been in business for over 40 years. As far as it making a difference I think it depends on the person because right now I'm drink water with baking soda in it. Stopped my instills 'till I see the uro. (they did) and way it helps soothe my bladder maybe because its making it less acidic not sure but helps for at least a day with the burning and stuff and eases the pain a bit.

            Comment


            • #7
              Thanks for the info. My doc does lido/ hep instills. It's the only thing other than DMSO which I've never tried. I did 5 weekly instills a year ago that didn't do squat but tried again a couple of months ago and I didn't feel better right away but I did for a couple days after that. The nurse that does them for me is awesome but has only worked there for a couple of months. She came from working in pediatrics. She hasn't even heard of people doing them by them selves. The docs that work for MY specific doc aren't as good and they'd be the one to teach me. I may try going to my doc that is 4 hrs away from me. I want to be taught by someone who has taught others.
              symptoms when in a flare:

              I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
              *I have a fibroid on my uterus near my bladder.

              Medication
              100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
              Flexoril 10mg (doesn't work)
              Hydrocodone 5/325 PRN
              Cetalopram 40mg *severe anxiety over flare

              Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
              My urethra are very tight.

              currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

              I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



              find me on Facebook! Brandy Schildknecht Covington

              Comment


              • #8
                Originally posted by bjcov View Post
                Thanks for the info. My doc does lido/ hep instills. It's the only thing other than DMSO which I've never tried. I did 5 weekly instills a year ago that didn't do squat but tried again a couple of months ago and I didn't feel better right away but I did for a couple days after that. The nurse that does them for me is awesome but has only worked there for a couple of months. She came from working in pediatrics. She hasn't even heard of people doing them by them selves. The docs that work for MY specific doc aren't as good and they'd be the one to teach me. I may try going to my doc that is 4 hrs away from me. I want to be taught by someone who has taught others.
                There is a link in my signature to a thread I started. It tells how I do home instillations. You may get some tips that may help you. Also in my signature is a link to Dr. Dell's site. He has several published articles on instillations. Your MD can contact him if he wants to discuss treatment. Just make sure he uses the Institute phone number, not the group.
                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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