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Thread: BLADDER OPTIONS: Dibenzyline, Expense, Options and Weaning Off

  1. #1

    Question BLADDER OPTIONS: Dibenzyline, Expense, Options and Weaning Off

    I've recently been told that Dibenzyline will not be covered by my insurance company for 3 month supplies and that I'll need pre-approval to order it at all. I was then told it will now cost $100 a pill or approximately $100,000 for a ONE YEAR supply! It has been about 10,000 the last few years. Many years ago I tried Hytrin but it did not work for me.

    I use a condom catheter for over 30 years now and my urodynamics look good. My doctor at Jefferson recommended weaning off Dibenzyline and introducing Flomax. However, he had no set plan to recommend other than going from 30mg. per day to 20 for a month then 10 then 0 and only then introducing the Flomax. I've gone from 30 to 20 for a week and have experienced some AD but am doing ok with adding even more fluids (about 110 oz. day). I have always taken 4000 mg. Vitamin C but read here about Uroquid for acidity. I might add this if it'd be helpful as a preventive measure.

    Anyone with experience weaning from Dibenzyline after so many years? I'm concerned the next drop to 10 mg. may raise my problems urinating to a point where it is too difficult to manage. Isn't it outrageous to see such a spike in drug price in one year!!

    Any advice would be welcome. Thanks, Jim

  2. #2
    Of course reflex voiding is rarely encouraged anymore, as we know that most people who use it unhealthy high bladder pressures. Dibenzyline only occasional helps to relax the internal bladder neck, but does not do anything for a tight external urinary sphincter, which is part of the cause of these high pressures, and poor voiding/high residuals. In addition, over time, the bladder muscle (detrusor) itself can decompensate and loose the ability to squeeze urine out though a tight sphincter, and may even become so weakened that even after a procedure like sphincterotomy, voiding may be poor. Intermittent cath then becomes the best bladder management method, followed by an indwelling urinary catheter. Vitamin C and Uroquid do nothing to manage high pressures or sphincter tightness/discoordination (dyssynergia).

    Dibenzyline can also mask the signs and symptoms of dysreflexia, so is not the best drug to use for detrusor-sphincter dyssynergia like this.

    What was your Pdet Max on your last urodynamics?? Did you have sphincter EMG done along with the CMG??


  3. #3
    Yes, I understand that reflex voiding is not recommended. Dibenzyline combined with larger amounts of fluids and Vit C (for acidity only) have kept me going so to speak, with no felt AD symptoms and no UTI's with rare exceptions, for 30 years. I have urodynamics and a kidney ultrasound every 2 years. My reason for changing now is the cost of the medicine. I don't know my Pdet Max (or what that stands for) but I did have a sphincter EMG done along with the CMG. I am only now reading about sphincter neck vs. external differences but since Dibenzyline has helped me for so long, I'm assuming that it has been a sphincter neck problem (a stint was considered several years ago but the doctor decided against it due to inconsistent results with other patients). I understand that Uroquid is not helpful with the primary concern but might augment or take the place of the Vitamin C. (I'd also never heard of it before reading here). Any further questions I should ask the doctor would be helpful. My primary concern is how to change medications safely and I thought others that had success with dibenzyline may have had success with a newer and more readily available medication. As a quad, I was hoping to continue avoiding intermittent cathing if possible but if that is something I must highly consider (along I guess with bladder aug) then I'll do so. Thank you for helping out here! Jim

  4. #4
    What is your level of injury? Do you have tenodesis?

    If you were to go the way of intermittent cath for bladder management, along with the use of anticholenergics to keep your bladder pressures down and avoid leakage, you could consider bladder Botox. We nearly always try this before a big surgery like an augmentation.


  5. #5
    Glad to hear I might be able to avoid the augmentation. I do have tenodesis AND highly successful tendon transfers. I'm a pretty strong C-6/7, am 5'10" and weigh 155. Still, the thought of needing an accessible bathroom and self-cathing has always intimidated me a bit as I'm used to putting a bag on and drinking as much as I'd like and being on my own with no other concerns. I have worked full-time for 20 years and am in/out of several buildings a day most of which have very limited accessibility. I'm sure I could get past this, then comes the need to prevent UTI's. As opposed to my usual routine, cathing, done by nurses during bladder testing has often caused UTI's for me, if I don't take a few days of antibiotics after. Despite my hesitancy, I realize I'm fortunate to have 30 years in and to be as healthy as I have been with no bladder issues. I am open to considering cathing if it is better for me in the long run than how I have been living AND if an eventual move in this direction is inevitable.

    Are anticholenergics along the lines of meds I have brought up? How do they work... I suppose to reduce bladder spasticity? I guess I'd have to drink much less as well. What is a usual fluid intake amount per day and self-cathing regimen look like? Would I need meds to prevent infections too? Could I get by with no external? I can't imagine cathing AND changing an external 4 or so times a day (skin problems, etc.).

    30 years ago, a sphincterotomy was recommended by a different urologist (not at Jeff). I upped my fluids, started the Vit. C and added dibenzyline and never looked back. I'd like to consider all of my options moving forward including staying with the current routine and having the insurance company suffer the consequences. Thanks again, sorry for all the questions! Jim

  6. #6
    We try to get our clients to stick to about 2.5 liters of fluids daily in order to be able to cath 5-6 times daily and not have caths that exceed about 450 ml. If you drink more, or go to a party and have a couple of beers (diuretic) you may have to cath more often.

    Anticholenergics work on the bladder muscle itself and are parasympathetic blockers. Common side effects are dry mouth and eyes, constipation, and for some, increase in cognitive deficits (this varies with the anticholenergic). They decrease bladder pressure and spasms, as well as increase capacity, which decreases the risk for leaking. These are drugs like Ditropan, Detrol, Sanctura, Vesicare, etc.

    Flomax and dibenzyline are sympathetic blockers (which is why dibenzyline is sometimes used to control the blood pressure boost in AD). They will (sometimes) relax the internal (not the external) urinary sphincter. They have a common side effect therefore of lowering blood pressure, which can be a problem for some with SCI.

    The external urinary sphincter is striated muscle, so is not relaxed by the drugs above, although it can be for some using Baclofen or tizanadine.

    It is not recommended to take any medications to try to prevent infections in those who do intermittent cath. Vitamin C has not been proven to help with this, nor has Uroquid, although some swear by it.

    If you have mainly had UTIs after inserting of catheters prior to tests such as urodynamics or cystoscopy, it is most likely that the pressure exerted on your bladder by the test solution (or bladder filling solution) is much more likely the culprit than the actual catheterization, as this can cause colonized urine in the bladder to reflux up the ureters into the kidneys and cause a kidney infection.

    If you have not had previous sphincter surgery (sphincterotomy or stent), then it is unlikely you would need to wear externals along with doing intermittent caths. Most men do clean (not sterile) intermittent cath, which is much easier to do and takes less time. Nor is it necessary to use an accessible bathroom to cath. Many people cath in their private office, back of their van, etc. This is easiest if you attach a leg bag to the catheter instead of using extension tube to reach the toilet, or use a touchless self-contained bag type catheter. You can then dispose of the urine later when you can get to an accessible toilet. Many men do this under a blanket or jacket while flying in an airplane too.


  7. #7
    Thank you for your responses. 5-6 times a day means 4 on the road. Is a super public port an option that might make it easier? I wear dress pants, tucked in button downs, thermals all winter, etc. Or, would a change in wardrobe be needed! on a plane! I'm impressed.

  8. #8
    You don't need to undress to cath yourself in your chair. Just open your fly. We often do use a "pant holder" (former called a Betty Hook) to get pants out of the way and keep lubricant off them when cathing.

    A suprapubic is an indwelling catheter with many of the same down sides as an indwelling urethral catheter. I would consider that a last resort as a replacement for your current reflex voiding regimen.


  9. #9
    hah! Super Public!, Have to check my spelling! I'll look up Betty Hook. Thanks again for all of your time and info. still never heard from anyone that weaned off of Dibenzyline to a different med. Anyone with experience please add to this thread. thanks, Jim

  10. #10
    Here is the original Betty Hook, but these can break if dropped on a hard (tile or concrete) floor:

    We use the metal Patterson (formerly Sammons) Pant Holder instead:


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