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Thread: Renacidin users - shortage?

  1. #11
    Hi Gang I use Renacidin
    CVS pharmacy also possibly now carries Renacidin
    I use it and get mine from them ^

    BTW I personally have spoken to the company who manufactures it and the man told me they are producing it .
    Sinccerely ;
    GL

  2. #12
    Senior Member CapnGimp's Avatar
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    Quote Originally Posted by marmalady View Post
    This sucks so badly. If Matt doesn't have the Renacidin, he can get grit/stone buildup in as few as 6 or 7 days, with blocked catheters and really bad AD. Continually changing catheters that are encrusted with grit do damage to the urethra, so it's not something we want to be doing all the time.
    After I had bladder stones removed I never had encrusted caths again. I used to have to remove my foley DAILY to unclog it (years ago). Might ought to get his bladder scoped ASAP. Urologist did this thru the urethra in a 'day surgery'.

    On a side note, when I don't have/can't afford vetericyn, I flush with hydrogen peroxide. It is hell on the foley after about a week but to remain infection free, eh, NO problem. Plus it's only a buck a bottle@wallywhIrled.

  3. #13
    Just FYI, this is an email I received today:

    Ben

    It is still an active product but there has been no supply since the end of July 2012 due to mfg. issues at the contract facility that produces the product for us. It now appears that we may not have product for 6 months.
    Robert S. Rubinger
    Executive Vice President
    United-Guardian, Inc.

  4. #14
    Senior Member khmorgan's Avatar
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    Quote Originally Posted by FallonRPh View Post
    While this product is on backorder, we are able to compound it (make it from scratch) for you. Your doctor's office may contact us at 800-890-1137 or 518-220-2005. We are Fallon Wellness Pharmacy located in Latham, NY.
    The compounded version of renacidin is $180 per 500ml bottle. Insurance may provide coverage.
    Sincerely,
    Erika Fallon
    Fallon Wellness Pharmacy
    Latham, NY
    5182202005 x110

  5. #15
    Senior Member khmorgan's Avatar
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    More info from the manufacturer of Renacidin:

    Sorry to inform you that it is now expected to be at least 6 more months before product is available. Please call if you want further details.

    Regards
    Executive Vice President
    United-Guardian, Inc.

  6. #16
    Hey, all,

    We're stuck in the same Renacidin black hole again. Fortunately we were able to hoard some at the end of the summer, and so are only now running out.

    I've spoken to Guardian, too, and had the same impression as everyone else - seems like they don't really care that there are people who actually rely on their product. And they hold the patent on it, so no one else can make it.

    We've found a compounding pharmacy in our town who will make the solution for us, and this is what he told us re the patent: Your doctor can't write the prescription for 'Renacidin' because of the patent. Guardian would be within their rights to sue the pharmacy. However, your physician can write the script for 'bladder instillation or irrigation compound', or something similar, and write the formula for the pharmacist to use, and that would be okay.

    We haven't actually ordered it yet, so don't know if Medicaid will cover this 'generic' or not. Re the comment below about the $180 for a 500ml bottle, that's steep!!! When we had it compounded before, it was about $55/500ml bottle.

    Oh, and if anyone is using 'Franke' or 'Frankie' pharmacy in Florida for compounding - don't! This is the outfit that used a compound that killed all the racehorses a few years ago.

    Here is a PDF from Guardian that actually lists the formula for the Renacidin compound -

    http://www.u-g.com/pinfo/Renacidin.pdf

    I realize I'm coming late to the current conversation, but hope I was able to provide at least a little info on what we've learned.

    To CapnGimp re the bladder stones and catheter clogging, Matt has had numerous bladder stones removed via cysto and flushing, and still forms the 'grit' - before he was on the Renacidin, we would do an 'emergency' cath change because of clogging, and within an hour there would be a half a cup of grit visible in the bag. The Renacidin has been a lifesaver for him in that it keeps both the grit and the bladder stone formation controlled. We've been using it for almost 12 years now.
    _____________

  7. #17

    Renacidin users - what are you doing w/shortage?

    We're about at the end of our rope with this Renacidin shortage. We have a compounding pharmacy here in town, and Matt just finished his first month with the compounded formula. He had a cath change yesterday, and there was so much grit on the end of the catheter that it scratched the urethra and there was quite a bit of bleeding. I'm going to call the pharmacy this morning, but am sending a call out here for anyone who's found a valid solution to this problem.

    I have spoken with the UG people a few months ago, and the conversation was so arrogant I almost hung up on them. Their attitude was mainly, 'oh, well'.

    Any help would be soooo appreciated!
    _____________

  8. #18
    Currently, a compounding pharmacy is the only option. According to the FDA website: http://www.fda.gov/drugs/drugsafety/.../ucm050792.htm

    Not expected to be available until at least May, 2013:
    http://www.fda.gov/Drugs/DrugSafety/...739.htm#citric

    (KLD)

  9. #19

    Unhappy Renacidin

    Quote Originally Posted by marmalady View Post
    We're about at the end of our rope with this Renacidin shortage. We have a compounding pharmacy here in town, and Matt just finished his first month with the compounded formula. He had a cath change yesterday, and there was so much grit on the end of the catheter that it scratched the urethra and there was quite a bit of bleeding. I'm going to call the pharmacy this morning, but am sending a call out here for anyone who's found a valid solution to this problem.

    I have spoken with the UG people a few months ago, and the conversation was so arrogant I almost hung up on them. Their attitude was mainly, 'oh, well'.

    Any help would be soooo appreciated!
    I too, was told that the renacidin for my daughter was on hold probably until June. She has kidney stones, and we almost lost her during kidney surgery two years ago. She is a C1 SCI quadriplegic. She has the same problems that Matt does with the grit and sediment. Can you send me the information about where you got the compounded formula filled and how expensive it was. I truly wish the company that makes this and/or the FDA knew how very much some people depend on this therapy. We are currently out of the renaciden. We were told to use NaCl irrigation in the meantime, but I think this does little to remedy the grit other than washing some of it out. I am sympathetic to your situation and just wanted to let you know that we are in the same boat.

  10. #20
    The compounding pharmacist and I went over the formula he was using, and it turns out that he was lower on the magnesium, so is going to boost that to bring it to the levels on the UG bottle.

    @Toni - The pharmacy we're using is a small, privately owned pharmacy here in town. I could ask him if he would ship it to you. They are cash only, and he would need a specific script from your physician.

    Have you looked around to see if there are any compounding pharmacies in your town? Start by asking your doctors, and then call any small, privately owned pharmacies you find in the phone book. The big chains and grocery store pharmacies aren't going to do compounding.

    My thoughts are with you and your daughter.
    _____________

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