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**comad** · 21 Jun 2022, 5:40 AM

My experience with oxybutynin and high neurogenic bladder led me to use minimal 5 mg per day of prolonged version of this med. Using 10mg daily makes my bladder & sfinter coordination bad and bladder holding more urine, yes, but voiding more often automatically rising my overall blood pressure. Maybe my input is not valid here as my bad fingers not allow me to do CIC on my own so I limit cath to once in the morning (my wife helps me) and the rest of the day condom cath.
One more thing - price of 10 mg Dithropan XL (oxybutynin) in Canada is $4 per pill so I am buying 4 times cheaper meds from India.

**McDuff** · 21 Jun 2022, 11:30 AM

- crispy1981 commented
  15 Jun 2022, 5:43 PM
  Thanks McDuff! Desperate for some empirical intel on this!
  Which med works for you? Did you try Oxybutynin?
  My bladder seems to trigger around the 400-450 mark thus far but of course as you suggest how do you know when you're at 400!?
  I'm continuing to wear a condom cath as i learn for now...to avoid the leaking when i hit the limit.
  
  Good tip on the urine color.
  
  So after 19 years how do YOU know when to cath?
  Also, any tips on what you take along and do you need to plan on being near a bathroom when u leave the house?
  
  Wil try not to abuse your generosity in taking time to share...thank you!

The dangers of getting old, and saying to yourself, "I'll get back to this later"....sorry

I use Vesicare, and like Oddity said, I also get Botox ~2x a year, the combo is what works for me. And like Oddity, the efficacy of Botox has diminished but not gone away. Your first couple of injections you'll be going Yeah Buddy!, cuz your holding capacity will shoot up, but they fade away in later injections. But still worth doing.

I have built up an internal clock it seems, I'll just go "whoops time to cath" and have gotten pretty good at it. I also get a "tingle" when my bladder is really full, if it "goes off" I have like 2 minutes before I void, so I try not to get there. It is also unreliable at times...weird body.

I have an under seat bag that has two zippered pouches, I use one for wallet and keys, and the other is my catheter pouch. I can fit 5-6 "bag caths" in there along with 5-6 gloves. I use the Coloplast SureCath hydrophilic all in one system when I am out and about. This way it makes no difference if there is a toilet around or not, if yes, I empty it in, if no, I just tie a knot in the open end and toss in the trash. I use 1 glove on the hand that will touch the cath, and then I can pull the glove off, over the cath I have gripped in my palm, making a neat package to dispose of.

I'm more than happy to offer what I can, but as you see, I may be a little late getting back to ya.

edit: I have tried probably half a dozen different meds, started with Oxybutinin, and can't remember what all else, I've been on Vesicare forever. Last trial was Myrbetric and it did nothing for me, when it does for others, that is why I say it's a trial for each individual.

**SCI-Nurse** · 21 Jun 2022, 3:19 PM

Many urologists are reluctant to do Botox until they have tried the wide variety of anticholenergic drug (oxybutinin, Vesicare, Sanctura, etc.) at their max dose for your bladder first, and only use Botox if they have failed with all of these. (KLD)

**stephen212** · 22 Jun 2022, 2:26 AM

I'm 38 years post injury, T4 complete. My uro history in brief:

Leg Bags: For the first ~8 years, I wore condom caths connected to a leg bag. Felt convenient to manage my bladder this way despite all the paraphernalia and occasional condom failure. Had regular urodynamic studies; my pressures continued to escalate over time
When it was deemed dangerous for me to not be taking medication to lower my pressures, I eventually had some success with oxybutynin. My pressures continued to climb and I was eventually on very high doses of oxy (beyond the mfr. recommendations) as prescribed to me by a highly-regarded academic urologist with a large SCI practice.
Oxybutynin instillations: The adverse effects of oral oxy meant I had constant dry mouth, and a foggy head. Even at stupidly high doses of oxy my pressures were still too high. I grew tolerant to it. It dawned on me that I could get a better oxy hit if I targeted it directly into my bladder rather than swallowing it orally. No urologist had ever told me about this! I began to dissolve the oxy in surgical saline solution inside a catheter-tip syringe. This worked brilliantly for me. But only for a while.
Botox: Prior to 2009 when I enrolled in the clinical trials examining Botox injections that led to FDA approval, MY BLADDER RAN MY LIFE! I was in the trial arm that received 300 units of Botox. It took 25 years of SCI existence before I was liberated from the tyranny of my leaking, gushing neurogenic bladder. Screw walking, having a dry bladder was like winning the SCI Cure Lotto!
I continue to get annual Botox treatments, though I've gone as long as 18 months. I don't appear to have developed a tolerance for which I'm extremely thankful.

**crispy1981** · 22 Jun 2022, 2:32 PM

Anyone use a wearable product that senses bladder volume?

https://www.dfreeus.biz/
https://novioscan.com/

**crispy1981** · 24 Jun 2022, 6:34 PM

Day 9 and i'm starting to settle in with a routine and my bladder seems to be leaking less.
- only leaked once in past 3 days.
- bladder seems to hold better now.
- Still have some hurdles - got some sample catheters that are self contained/travel size.

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Best Advice on Starting CIC using Oxybutynin

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