Desmopressin

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I have spoken to a few people who were put on desmopressin and it worked immediately. Has anybody had any experiences with this drug? My doctor will not prescribe it due to the dangerous side effects. I have also heard that Vesicare works but not as effective as desmopressin.

 

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I have been on vesicare and honestly I didn’t notice much however I was on merbetriq at the same time. Still on merbetriq however no longer on vesicare. I haven’t heard of the other one your doc doesn’t want to prescribe to you. So not much help lol lol

 

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Nearly all medications have side effects. Demopressin, aka DDAVP, has been around for over 25 years. Was very expensive in the beginning, but now is very cheap. Medications to treat OAB, will cease working when you stop taking them. Will add more later

 

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100% agree with you Artiejr so one has to way the benefits against the costs aka side effects. The joys of our conditions.

 

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At this point I am willing to accept the Band-Aid since nothing else has worked. It does not seem that anyone has found a cure except for desmopressin which seems to be a Band-Aid like the others

 

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Exactly and sometimes bandaids are great things. The problem with incontinence issues they obviously can be very complex issues clearly since they cannot be easily solved. Therefore us unfortunate soles need to choose what we are willing to accept the cba (cost benefit analysis) for and what bandaids we are willing to accept. At the end of the day diapers are a bandaid however we know what we are going to get through our own trials and tribulations. Honestly I would go back to your doctor say you have research the drug they don’t want to give you and say “I want to try it as nothing else has worked and I am willing to accept the side effects and want to experiment with it to see if it can help me greatly without me getting to annoyed with the side effects.” There should be no reason they will not prescribe you the drug. You are accepting the risks and it’s a bandaid which may help you out. It’s your body at the end of the day.

 

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Exactly

 

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I want to try Desmopressin, too (at night, to shut down my renal system, so I can sleep). But I’m scared of damage to my kidneys and liver because our bodies produce and release waste for a reason, and that waste needs to exit our bodies, not hang around. So I’m going to see a nephrologist (kidney doctor) before I’ll try Desmopressin. It’s nearly identical to Vassopressin, which has been around for about 100 years. So it’s an old medication, tried and true.

 

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Please keep in mind that your doctor is much more likely to hear/read about new concerns regarding medications before we are- long before. I've had to deal with ui since 1988; when it worsened a few years ago, I re-examined the options open to me, medication-wise, and my choices were to use protection ALL the time, or the side effects common to these meds, most of which I already contend with from a head injury. Added to that is the likelihood of dementia, which comes with (apparently) all of them. I don't want these symptoms to be aggravated, nor do I wish to spend my final years bed-bound drifting into and out of coherence, unable to tell my caretakers (people
Who don't have time to do their job property as it is) that my skin problems are driving me RIGHT OUT OF MY MIND...

 

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100% correct jeffswet and we all hope our Doctors are keeping up with the latest research. A sad reality is that some of them do not.

I am very lucky in that my wife is a doctor and is up to date on most things in medicine and yet there are somethings she doesn’t know and would direct me to other sources. I think we have to be our own health advocates and research ourselves and make conscious choices on what we are all willing to accept. Unfortunately you are the only person in your body that knows what is going on or what symptoms are troubling you. Doctors mean well and are there to provide a service and attempt to help us however a lot comes back on us. How well are we communicating our symptoms, what are we willing to accept as side effects if any at all and ultimately unfortunately sometimes a complete fix is not in the cards for you. It’s sad but it is a reality. Sometimes life is extremely unfair and one just has to make the best of it as otherwise life will pass us by. It’s hard to accept but also very freeing when one does.

Make the most of every moment in ones life and slow down to the speed of life. A brutal reality that wow I needed to do much counselling on and still have to constantly remind myself to enjoy the small things and don’t let life pass me by. And honestly like many have said on here it could be much much worse.

 

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Most of the medications, if not all, that treat OAB, have serious side effects. I've noticed that they can cause high blood pressure, increased thirst which can make you pee more, (counteracts the meds), headaches, etc READ ALL THE WARNINGS AN SIDE EFFECTS BEFORE USING THESE MEDICATIONS. ALSO CONSULT WITH YOUR DOCTOR. I chose diapers and plastic pants because of all the side effects. My choice.

 

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So far the people that I have spoken to that are on desmopressin have had immediate results with no side effects except for the minimal excessive thirst, dry mouth and headaches which is nothing compared to the reality

 

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Usually as soon as the medications are discontinued, the issues return. I couldn't tolerate the side effects, that's why I chose to wear diapers and plastic pants.

 

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Yeah I used to think dry mouth was “just” annoying when I took 30mg Ditropan/Oxybutynin, until that dry mouth necessitated seven root canals, nine crowns, 1-4 cavities IN EVERY. SINGLE. TOOTH., and permanent gum damage. I only took Ditropan for three years and that happened. Now my dentin is permanently exposed, for life. I’m at my dentist as I type this. 10 further cavities and a crown just since January 2020, and that’s AFTER I quit taking Ditropan. Dry mouth screwed my teeth for life. In my entire life prior to Ditropan, I’d only had four cavities. So watch out when a medication lists a primary side effect of dry mouth. I know of all the bladder medications, Ditropan causes the driest mouth. Myrbetriq doesn’t cause any, works totally differently. Myrbetriq is a new medication while Ditropan is a 100-years-old crappy medication. I don’t know why I took it so long (2.5 years); it definitely makes OAB more frequent and painful.

 

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I have only had minor side effects from all of the medications that I have been on

 

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Not all side effects are reported with medications. The ones that are the most common are listed. If you experience other side effects other than the ones listed, they should be reported to the manufacturer so they can add them to their list.

 

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I'm so happy I found this forum! I have an appointment next week with my doctor and was going to ask for desmopressin and from what I've read, I think the only band-aid I want is diapers since there are no physical side effects. I want to ask though why are there so many side effects if some children are given the drug when they go through bed wetting? Does anyone know?

 

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Both my daughter and I tried DDAVP when it first came out back in the early 90s. It didn't work for either of us and was expensive, around $200.00 a month for both of us. Had side effects which I didn't care for. Determined diapers and plastic pants were the answer. My daughter stopped bedwetting on her own around 12, me not yet. Still wetting nightly.

 

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@23andpee I tried it. It did stop urine production, but didn't stop the bladder spasms that wake me up, so I wasn't any better off and stopped it.

 

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@23andpee Vasopressin is better than the horror of chronic insomnia due to nocturnal polyuria / OAB. Diapers leak. Bedwetting is by far the worst blow to my ego I’ve ever had to survive... so far. It’s only been 4.5 years. I’m slowly getting more used to it and the high likelihood I’ll be alone for life. I would hate to have been a bed wetter as a child. As for why it’s prescribed for kids (or anyone), it’s because Desmopressin is a slightly altered version of Vasopressin, which has existed for over 100 years. It’s a very safe medication.