Latest Blog Article: Interstitial cystitis is more of an injury to the bladder
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  1. #1
    ICN Member jwrn's Avatar
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    Aug 2012
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    22

    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. #2
    Support Leader kadi's Avatar
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    Dec 2003
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    California
    Posts
    8,483
    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 60mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic to prevent UTI infections from 2x daily catheter use
    -Colace & Senna to treat chronic constipation from meds
    -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!

  3. #3
    ICN Member jwrn's Avatar
    Join Date
    Aug 2012
    Posts
    22
    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!

  4. #4
    Support Leader kadi's Avatar
    Join Date
    Dec 2003
    Location
    California
    Posts
    8,483
    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 60mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills every morning and night
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic to prevent UTI infections from 2x daily catheter use
    -Colace & Senna to treat chronic constipation from meds
    -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!

  5. #5
    Support Volunteer L. Thomas's Avatar
    Join Date
    Aug 2005
    Location
    Sparta, TN
    Posts
    1,395
    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
    IC scholarly articles: http://www.mypelvicmedicine.com/dell_pubs.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 resuce instillations.
    Find me on facebook: L. Clark Thomas
    Louann

  6. #6
    ICN Member
    Join Date
    Aug 2012
    Posts
    162
    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.

  7. #7
    ICN Member bjcov's Avatar
    Join Date
    Nov 2007
    Location
    Benton City, WA
    Posts
    788
    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

  8. #8
    Support Volunteer L. Thomas's Avatar
    Join Date
    Aug 2005
    Location
    Sparta, TN
    Posts
    1,395
    Quote 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
    IC scholarly articles: http://www.mypelvicmedicine.com/dell_pubs.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 resuce instillations.
    Find me on facebook: L. Clark Thomas
    Louann

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