www.incontinentsupport.org

Support for dealing with incontinence
It is currently Thu Mar 28, 2024 9:38 pm

All times are UTC - 5 hours [ DST ]




Post new topic Reply to topic  [ 10 posts ] 
Author Message
PostPosted: Fri Feb 05, 2021 11:04 pm 
Offline

Joined: Sun Jan 31, 2021 11:14 am
Posts: 212
So I walked out of my first, of a few upcoming Urology appointments with a handful of Myrbetriq samples, and maybe some optimism.

The visit went well. My doctor seemed empathetic, and sincere with his concern for me. We discussed the testing, and he reassured me that "we'd figure this out", and that "there are options." I also somehow got moved up the list to get into the testing next week, as opposed to the end of March. So I guess that's my update with that.

My question/s is: for those of you that have take both Detrol and Myrbetriq, did the Myrbetriq work better? Even a little? Were the brain fog side effects better, or worse? Overall did one of them work better for you? Or, was it just a wash?

I have these samples. I haven't taken any yet. I've taken Detrol for 5+ years. I got used to the Detrol side effects. I don't think I can handle worse. The memory loss thing is real, no matter how much they try to dismiss it or minimize it. Also, the fatigue and eyesight crap. If it is only marginally better but side effects are worse, I guess I'd have to weigh that.

So if you had to compare the two directly, what are your thoughts?

Thanks all.

_________________
Thank you kindly,
CG


Top
 Profile  
 
PostPosted: Sat Feb 06, 2021 4:38 am 
Offline

Joined: Wed Apr 15, 2015 7:09 pm
Posts: 158
I tried the Detrol for about 6 months before giving up cause side effects where much worse than the issue it was to solve which it didnt anyway.
I brought up the mybertreq to the doc last month and he said dont bother. will have alot of same issues as well.
I am dealing with Long Covid as well. and am dealing with the longterm effects of that as well.


Top
 Profile  
 
PostPosted: Sat Feb 06, 2021 8:36 am 
Offline

Joined: Sun Jan 31, 2021 11:14 am
Posts: 212
Gosh, I'm sorry to hear about the Covid crap you are having to go through. Side question on that: has that made your IC worse?

I agree about side effects from Detrol. I've not taken any for 3 days, for the first time in 5 years. I feel actually pretty good. My IC hasn't drastically gotten worse either. I'm pretty torn on weather to try the samples or not. I do want to find solutions, but I don't want to feel sick, and not be able to see.

_________________
Thank you kindly,
CG


Top
 Profile  
 
PostPosted: Sat Feb 06, 2021 5:37 pm 
Offline

Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
I took Detrol beginning in the late 90s, and Myrbetriq when it came out. I stopped both last year while I await permission to have my sphincterotomy. My experience with Detrol was that it gave me dry mouth, so that I inadvertently drank too much water, which was counter-productive. The Myrbetriq had fewer side effects; however, the bladder spasms, although reduced, never stopped.


Top
 Profile  
 
PostPosted: Sat Feb 06, 2021 10:34 pm 
Offline

Joined: Sun Jan 31, 2021 11:14 am
Posts: 212
Thanks Patrick,
Wishing you the best for your upcoming surgery. Hope you get some relief soon. My hat goes off to you for having a positive outlook with all that you're dealing with.

Maybe I will give Myrbetriq a go. Did you say it worked a bit better than Detrol? It's more reassuring to me to have someone who's used both, tell me how they thought the side effects compared. I still don't really know what is happening inside my body now before I get more tests done next week, and it's just been so wacky, so I'm anxious about adding anything new to the ecosystem. I actually took my Detrol again today after I had some pain, and strain.

I have a side question for you: can you describe what your spasms are like if it isn't too personal? I'm wondering if what I'm experiencing is like a spasm. When I feel an urge I will attempt to hold back, but instead my bladder will freak out and send a jolt through my entire body and then I will spurt. I will continue on burst fire like that, every couple of seconds, until some pressure subsides. It's not always painful, but It's always annoying. I don't know if that is a spasm, but I know something is goofed up.

Thanks again,
JW

_________________
Thank you kindly,
CG


Top
 Profile  
 
PostPosted: Sun Feb 07, 2021 1:16 pm 
Offline

Joined: Sat Mar 29, 2014 11:45 am
Posts: 1836
I guess the best description is to compare my bladder spasms to a charley horse, but of the bladder. My external urinary sphincter clamps shut; my bladder goes into a hissy fit, and I am in agony until it resolves. I
cannot take pain medications because they slow the GI system, and my GI system is already way too slow. I had my first sphincterotomy in August, 1999, which needs to be repeated. I am thankful for adult diapers, because I could not function without them.


Top
 Profile  
 
PostPosted: Sun Feb 07, 2021 2:58 pm 
Offline

Joined: Sun Jan 31, 2021 11:14 am
Posts: 212
I'm sorry you have to go through that. Praying you get relief from your upcoming procedure. I don't think I'm experiencing that.

Thank you for your words, good Sir.

-JW

_________________
Thank you kindly,
CG


Top
 Profile  
 
PostPosted: Sun Apr 04, 2021 1:52 pm 
Offline

Joined: Sun Feb 07, 2021 2:40 pm
Posts: 64
Location: Newmarket Ontario
I was wondering CG how the myrbetrig is working out for you? My urologist has started me on the same thing. It has been a week now and I find that concentration and dizziness is real problem. My blood pressure has been much higher too, No dry mouth yet , and no real improvement in bladder retention yet either. I have very little sensation or warning and I just start going ( still trying to figure that out). If and when I have a strong urge it becomes immediately painful and the flood gates open , but it usually is not a lot of volume. Then back to constantly leaking . I am on rapaflo silidosin which is supposed to shrink my enlarged prostate. Judging from the number of times I have to change a day , that is working.
I really do not like being hazy and not clear, but it has only been a week maybe I will get use to it. I am getting so tired of changing so much but if I don't I will end up with UTI's which are not fun. Others can chime in as well , let me know when you get a chance.

Paul Henry


Top
 Profile  
 
PostPosted: Sun Apr 04, 2021 9:46 pm 
Offline

Joined: Sun Jan 31, 2021 11:14 am
Posts: 212
Hi Paul,

Thanks for asking.

I can share my experience with Myrbetriq but don't know if it will be much help. I only took the samples my doctor gave me, and only for about a week. I'm not currently taking any anticholinergic meds. I was told if I don't have any discomfort, I should stop taking them. There is a known risk for dementia that I was unaware of, only the "fog brain" side effects that I noticed. Myrbetriq is supposed to be less cognitively impairing, but I didn't notice a huge difference honestly. I took Detrol for 5 or more years straight and yeah, I probably got used to it, but I was also unaware in the beginning that those actually were common side effects. Now that I'm not taking any of those type of meds, I do actually feel noticeably more clear headed.

My thought process for if medication is right for me is: if it can get me to stop wetting, or minimally, and I don't have issues overnight, I would for sure take it. I was able to manage a lot of years with only small accidents, and once or twice a year have a bout of enuresis. If I could get back to that even, I'd go for it. I'm definitely not content to wear and change diapers 24/7. I totally feel your pain about that! It's inconvenient, and unhygienic. Not to mention the damage to a person's psyche.

I really don't want to influence any decisions you would have for your own health, but I would say if you were seeing a positive result, and the side effects were doable for you, why not keep going? If your doctor offered this as treatment and it works for you, great! That being said the side effects can be hard to deal with if there isn't any real improvement. I know exactly what you're going through right now.

At any rate, I hope you do get some results and reprieve from the daily grind of IC stuff however that comes about.

_________________
Thank you kindly,
CG


Top
 Profile  
 
PostPosted: Mon Apr 05, 2021 8:47 am 
Offline

Joined: Sun Feb 07, 2021 2:40 pm
Posts: 64
Location: Newmarket Ontario
Thank you CG for responding , your insights are helpful. My Urologist has prescribed the Myrbetrig for the next year , as well as the Rapaflo Silidosin I see him again in July. He is a very results driven doctor and I like that. He is a specialist in urological micro surgery but I just can't get there in my mind yet, so medication it is for now.
It would be really nice to get the daytime control back. The hazy mind hopefully will clear up , it is the only real asset I have to work with these days. My physical work days are over , I just sold my work van and I will be selling my heavy equipment through out the year, I just can't handle it physically anymore with out extreme pain.
I hope to go back to university and finish my post graduate program, and become a hospital Chaplain ,perhaps I can provide some hope to others who like me have suffered near death trauma.
Thank you for responding and all the best in your journey.

Paul Henry


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 10 posts ] 

All times are UTC - 5 hours [ DST ]


Who is online

Users browsing this forum: No registered users and 14 guests


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB® Forum Software © phpBB Group