Medication

[lilshelly]

So I went to my PCP today. Told him about having I guess urge issues and I don't empty my bladder completely.
Has anyone had any experience with a medication called pxyBUTYnin. The doctor said that it will dry me up. I told him I was going to try and attend the doctor's appointment without a brief and didn't feel safe doing so.
I was wonder if anyone has taken this? Results?
We are going to try the medication route because I can't afford the urodynamics test at this point. I am actually upset about this. The doctor also pointed out that I am on a diuretic. I have been on that medication for years and I have not had any issues. I don't wear my diapers 24 7. I only wear when i go out and at work. When I am at home I can make it to the bathroom. I do have Cerebral Palsy but I have never had any issues there.

 

[ltaluv]

I've taken oxybutynin. It maybe helped a little, but not a whole lot. The only side effect I had from it was a dry mouth, which improved after I'd been on it for a few weeks. Since it didn't help much, though, my urologist moved on to other treatments, so I didn't stay on it for more than a few months.

 

[Wetshisbed]

Any medication I took for my incontinence and enuresis gave me eye problems so I gave up on it.

 

[Pino]

I tried several Anticholinergika, Oxybutynin was the last one, Kentera sticker version. It shall have less side effects this way.

It was better than the others, but i still had a lot of problems from it, but i do have Dys-Autonomia as well and the medications work exactly at this point. The Oxybutynin was used by me for about a month when i lost control over my bowels. After getting rid of it that stopped again, but i do have got IBS on top. So maybe it was just bad luck. In the end nothing worked for me.

 

[EcoIncon]

I'd rather lose control of my bladder than my mind. This study (and others) illustrate a 50% increase in dementia risk from bladder Anticholinergics. I'll suck it up and wear a diaper. That said, before I learned about this Oxybutynin gave me dry mouth and much better control of my bladder... so it did work for me.

 

[Diprs2]

So I went to my PCP today. Told him about having I guess urge issues and I don't empty my bladder completely.
Has anyone had any experience with a medication called pxyBUTYnin. The doctor said that it will dry me up. I told him I was going to try and attend the doctor's appointment without a brief and didn't feel safe doing so.
I was wonder if anyone has taken this? Results?
We are going to try the medication route because I can't afford the urodynamics test at this point. I am actually upset about this. The doctor also pointed out that I am on a diuretic. I have been on that medication for years and I have not had any issues. I don't wear my diapers 24 7. I only wear when i go out and at work. When I am at home I can make it to the bathroom. I do have Cerebral Palsy but I have never had any issues there.

I tried Oxybutinen for about 2 weeks. I noticed I started experiencing my pulse was pausing quite regularly and I stopped taking it. I didn't take it long enough to identify any other side effects or whether it had any positive effect on dealing with my oab.

 

[Tetra]

Many urologist have stopped prescribing them ,simply because there’s a 99% failure rate , most patients never need refills because they discontinue taking them because mountains of side effects people don’t like . And the 99% isn’t arbitrary it comes from a study published about 5 years ago in JAMA.

 

[ltaluv]

Many urologist have stopped prescribing them ,simply because there’s a 99% failure rate , most patients never need refills because they discontinue taking them because mountains of side effects people don’t like . And the 99% isn’t arbitrary it comes from a study published about 5 years ago in JAMA.

I've searched for a study like what you cite, and I can't find it in JAMA or anywhere else. The success rate of anticholinergic is around 70%, according to NEJM. This particular study compared success rate of anticholinergic meds with botox.

The study that @EcoIncon cites is specific to older adults (over 55). The odds ratio is 1.64 for bladder anticholinergics, which is quite high and one of the reasons that some urologists have reduced the number of anticholinergic prescriptions they write for older patients. There are also a few newer meds that have fewer side effects, such as Myrbetriq.

User polls on sites like ADISC are laced with selection bias. To get good data, you have to start with a random sample that reflects a cross section of the demographic that you wish to study

 

[InconLifer]

I’m on Duloxetine for neuro issues and I’ve had mixed results. On 60mg my incon issues were much better but I couldn’t tolerate the higher dosage. I tried 40mg - on one brand it was like I wasn’t taking anything and on another my urinary incon issues were better but my bowel issues were a lot worse and it turned me into a zombie.

I’ve found a brand and dosage that keeps me stable and lessens the nerve pain and on 30mg it’s unpredictable but my bowel issues are a lot better (although the downside is that constipation’s a big issue). I have some better days bladder wise and so there’s definitely a benefit but weirdly bedwetting is a lot worse.

Ultimately, the meds do enable me to do things I wouldn’t be able to do otherwise. The side effects aren’t pleasant though but there’s still a net gain as it were.

I find the main issue with meds is it’s a lot of trial and error and it can be frustrating. With my dosage changing and my pharmacy switching brands all the time recently it’s all very frustrating. Fortunately I have found something that has had an impact even if it isn’t a wonder drug.

I guess my main choice is up the dosage and be completely dry but not be able to do anything or be a bit more active and do more of what I enjoy doing but still have incon issues. Personally, the latter is the main thing for me. If I can’t read and build up to going back to uni I don’t see the point really. I’ve kind of made peace with the nappies now even if I do have days when it still gets me down. The main thing I’ve learned is that for me anyway, feeling like me is more important than continence. If I’m just sat on the sofa all day then I don’t see the point - especially as that’s why I’m on this stuff in the first place!

 

[Edgewater]

I understand ltaluv position, but disagree that there is a bias that exists here that does not represent the general population. His recommendation is only the latest in a long list of treatments /medications. Even in the early use of this combination, he recommends, problems are beginning to surface. Time will tell if that continues or stabilizes as a defined population is found and general application is halted.

The ongoing transition with in the urology world is a reality as they move from one medication to another! What is driving that change is the serious side-effects caused by the vast majority of medications that have been available.

 

[lilshelly]

Well I took this new med last night and this morning and I have had the worst case of dry mouth I can remember. I don't know how old any of you are but the best way to describe what I feel is well. You remember your parents handing you a 9 volt battery and telling you if it tingled on your tongue that it was still good. I was telling my husband that you know how a cat's tounge feels like sand paper. I said I could give the cat a run for its money.

 

[Edgewater]

Well I took this new med last night and this morning and I have had the worst case of dry mouth I can remember. I don't know how old any of you are but the best way to describe what I feel is well. You remember your parents handing you a 9 volt battery and telling you if it tingled on your tongue that it was still good. I was telling my husband that you know how a cat's tounge feels like sand paper. I said I could give the cat a run for its money.

Note: You will want to call your Dentist, Tuesday and ask them what effects dry mouth 'will' have on your gums and teeth. I'm just finishing-up a bit over $20,000 USD on repair from another medication that causes dry month.

 

[Tenaman]

I was prescribed oxybutynin for my bed wetting after I had a neck injury in my mid 20s but it did not help. I remember the dry mouth. I was also prescribed Desmopressin/DDAVP nasal spray but that gave me terrible headaches and daytime urgency although I did use it occasionally if I was staying away as it did stop my bed wetting. I always had a waterproof sheet on the bed and used to also wear adult nappies to manage my bed wetting. After a while I decided that medication was not the answer as it caused more problems and so have worn adult nappies ever since. Subsequent spinal issues over the last 40 years have now left me with no proper control and so I now wear them 24/7.

 

[Bigbabybret]

the way i see it is:

You try medications, and it might help, it might not, you then change the medications.

But at some point your body will do what it will do, wether that is able to be dealt with by meds or not, eventually the meds will not work and you may try another.

But at some point if you have IC issues they dont get better, and usually get worse and are left with little choice but serious side effects or deal with the IC physically (Diapers/cath/etc).

IMHO everyone if they live long enough with have IC issues, things break or wear down or wear out in the body over time and you need to come to the realization that its currently not feasable to replace thoes parts, maybe someday it will be, but not yet, and will end up for the most part with IC issues.

We come in to this world IC and in diapers, and most will be that way before leaving this world, this is just life, and it shouldnt be any different than having issues with diabetes or BP or heart and shouldnt be any stigma about it, and hope that will be the case soon

 

[InconLifer]

Well I took this new med last night and this morning and I have had the worst case of dry mouth I can remember. I don't know how old any of you are but the best way to describe what I feel is well. You remember your parents handing you a 9 volt battery and telling you if it tingled on your tongue that it was still good. I was telling my husband that you know how a cat's tounge feels like sand paper. I said I could give the cat a run for its money.

Frustratingly, dry mouth is an issue with so many meds. The only thing I've found that works is electrolyte tablets. I drink water with a tablet first thing and last thing (well, not completely last thing, I try and have my last fluids at around 8pm to stop bedwetting but it doesn't make a difference!) and that keeps it in check.

 

[Eclectic]

I tried Oxybutinen for about 2 weeks. I noticed I started experiencing my pulse was pausing quite regularly and I stopped taking it. I didn't take it long enough to identify any other side effects or whether it had any positive effect on dealing with my oab.

Was that pre ventricular contractions? I have PVC’s and lots of medications (even antibiotics) can make mine worse. It feels like a paused or skipped heartbeat. I saw a cardiologist years ago about it.

My problem with medications is I am always trading one problem for another. And, they don’t cure anything, just help you manage your condition.

 

[InconLifer]

My problem with medications is I am always trading one problem for another. And, they don’t cure anything, just help you manage your condition.

Really relate to this! I’ve been on a side-effect go round as the pharmacy has been switching up the brands of my meds. I’ve also found that my meds aren’t a miracle cure but they take the edge off - I feel some doctors are over optimistic in terms of the changes medication can bring about.

 

[schooner]

Not a big fan of anticholingerics due to the common side effects and their lack of effectiveness in my case. More recent concerns over increased chance of dementia (https://www.health.harvard.edu/mind-and-mood/anticholinergic-drugs-linked-with-dementia) also presents potential problems, especially for older adults. All those issues aside, I have severe OAB and although Ditropan, Oxybutinin and Detrol (those are the ones I can remember) offer a measure of help, I have found that while my unwanted bladder contractions are reduced, they are not eliminated, and I still wet my pants and with a larger amount of leakage.

 

[Diprs2]

Was that pre ventricular contractions? I have PVC’s and lots of medications (even antibiotics) can make mine worse. It feels like a paused or skipped heartbeat. I saw a cardiologist years ago about it.

My problem with medications is I am always trading one problem for another. And, they don’t cure anything, just help you manage your condition.

Yeah, PVCs as my cardiologist labeled them. He didn't seem that worried about them given my age (70). I don't want to deal with any side effects from bladder related drugs. That's why I chose to rely on diapers

 

[Eclectic]

Yeah, PVCs as my cardiologist labeled them. He didn't seem that worried about them given my age (70). I don't want to deal with any side effects from bladder related drugs. That's why I chose to rely on diapers

I am younger than you, but can relate. Diapers aren’t for everyone. However, I do think they are the least impactful on my overall health and I even like them most of the time.