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Renacidin users - shortage?

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    #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.
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      #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!
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        #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)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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          #19
          Renacidin

          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.

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            #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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              #21
              Spoke to our pharmacist yesterday and the latest news we have is that Renacidin will not be available commercially until at least MID-JULY 2013.

              A compounding pharmacy is your best bet meanwhile. You can often find them by Googling "compounding pharmacy" + your location name.

              (KLD)
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                #22
                Originally posted by marmalady View Post
                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.
                This isn't exactly accurate. The patent for Renacidin was filed more than 20 years ago. I know, I've been using it longer than that. In the US a drug patent protects a product for 20 years. The patent for Renacidin expired long ago.

                Of course, the name Renacidin is copyrighted, which lasts 75 years, and means you can't mix some up and call it Renacidin.

                Unfortunately, no other company makes a generic form. If they did it would be cheaper and available.

                So, you can tell your doctor that you want generic Renacidin and give him the formula.

                Personally, I found I can do without it. I may or may not resume using it when it is available again.

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                  #23
                  So the issue is copyright infringement and not patent. The pharmacy still won't fill the script if it says renacidin. Our pharmacy had the physician write the script as bladder instillation.

                  I'm glad you can do without it; my son absolutely can't. In just 5 days on the incorrect formula, he had built up enough grit on the cath tip and in his bag that it was causing problems. He had a cath change with lots of bleeding and dysreflexia caused by the grit as the catheter was being removed.
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                    #24
                    Originally posted by marmalady View Post
                    So the issue is copyright infringement and not patent. The pharmacy still won't fill the script if it says renacidin. Our pharmacy had the physician write the script as bladder instillation.
                    Not that it matters. or that anyone reading this cares, but I'll bet the issue is that the pharmacist is following a rule besides copyright or patent law.

                    I'll bet that if you ask a pharmacist to "mix up a batch of Renacidin", and he/she did it, he/she would be assuming the responsibility (and liability) of their compound being exactly the same as Renacidin, the product, versus the formula published by the company. For example, suppose the manufacturing process for the product Renacidin included being heated to 240 degrees F for 10 minutes before bottling. That does not appear in the formula, so the pharmacist wouldn't know to do it.

                    Of course, many years ago, you could by Renacidin as a powder and mix it yourself. So, you don't need to worry about missing manufacturing steps like this.

                    Sorry. I brought this up... Your original post was accurate enough.

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                      #25
                      Latest from the FDA drug shortage webpage (updated 11/1/13)

                      Shipments to drug wholesalers will commence October 31, 2013. National availability at the retail level expected by 11/15/2013.
                      We shall see. Frequently promised in the past, but not fulfilled.

                      (KLD)
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                        #26
                        Hi Bob,
                        Some of us actually own stock in companies that make items we use. This is especially true of smaller publicly traded companies and new ones.

                        Is the current lack of product due to a failing grade by the manufacturer during an FDA inspection? I'm talking about the manufacturing plant itself not the product.
                        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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