Has anyone here had BOTOX injections in the bladder ?

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Has anyone here had BOTOX injections in the bladder ?

Postby dc10 » Thu Feb 07, 2013 1:09 pm

a uro-neurologist has offered me this treatment option of having BOTOX injections in the bladder to improve bladder incontinence symptoms,
he said it improves MS patients urgency, frequency and control of their bladder,
you are under a local anaesthetic for 45 minutes during the injections, and the effects last 6-12 months before requiring further injections,

this 'trial' seems promising and as i have this option for treatment am very tempted to go ahead with the injections,

my bladder has been very poor over the last year, passing urine every 45-90 minutes, lack of control and very urgen neeed to goi have
i have nocturnal enuresis every night 1-3 times each night.


but before i have the injections i wanted to hear from others who have had or are still having botox injections in the bladder

how are your bladder symptoms before and after?
would you recommend this treatment?
has anyone heard of good or bad reports of this treatment? any long-term risks/danger?
how often do you need further injections in the bladder?

- im sick of the bladder drugs like tolterodine, oxybutynin, trospium etc, as they seem to weaken my legs and blur my vision

do you get side effects with botox injections in the bladder?]
my dr just warned me if you stop passing urine after the injections i may have to self-catherize,
something which ive never done but hope it isnt too fiddly / difficult or risky with uti's

thank you
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby lyndacarol » Thu Feb 07, 2013 6:08 pm

Here is Dr. Elizabeth Mueller of Chicago's Loyola University speaking about Botox for overactive bladder (urge incontinence) on The Dr. Oz Show last fall. There is a specific mention "for MS"@1:20 in the video:

http://www.doctoroz.com/episode/dr-ozs- ... ideo=16145

Part #2 http://www.doctoroz.com/episode/dr-ozs- ... ideo=16144 mention "for MS"@1:20
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby dc10 » Tue Feb 12, 2013 3:04 am

Thanks Lyndacarol for the links,
but has anyone had botox injections, or heard/read good patient reports of these botox injections?
how good were the improvements in bladder frequency, urgency and control?



Which option would be easier / safer on the human body ....
BOTOX injections once every 6-9 months
or
Trospium - either 60mg once daily or 20mg twice daily


I would of thought taking a daily bladder drug (anticholingeric/muscurinic) would be more harmful on the body than Botox injections in the bladder once every 6-9 months?
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby dc10 » Sat Feb 16, 2013 3:31 am

Has anyone had these botox injections in the bladder?

if not, where can i find patient experience with botox injections in the bladder?
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby questor » Tue Sep 03, 2013 9:24 am

dc10,
I'm considering BOTOX as an alternative to tolterodine, the dizziness is very troublesome. I already self-cath 3 times daily, so I think I can deal with the paralyzing effects of BOTOX in the bladder.

Did you try BOTOX? Did you get good results?

Thanks for any information.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby THX1138 » Tue Sep 03, 2013 5:14 pm

I have not tried botox.
Serious Mg supplementing has eliminated the urinary retention that was causing me to return to the toilet shortly after urinating and to try to finish the process.

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Re: Has anyone here had BOTOX injections in the bladder ?

Postby questor » Wed Sep 18, 2013 5:19 pm

I'm scheduled to have this done next week, my pre-op appointment is tomorrow.

Here is a link to a site that contains some patient stories:

http://www.botoxforincontinence.com/bot ... ories.aspx

I'm hoping for good results, time will tell. I'm definitely looking forward to discontinuing tolterodine, and being able to leave the house without fear of an accident.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby questor » Sat Sep 28, 2013 7:26 am

http://www.ncbi.nlm.nih.gov/pubmed/24072665

CONCLUSION:
Regardless of concomitant anticholinergic use or etiology, onabotulinumtoxinA significantly improved UI symptoms, urodynamics, and QOL in patients with UI due to NDO. OnabotulinumtoxinA was well tolerated in all groups.
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby DougL » Mon Sep 30, 2013 6:21 am

questor wrote:http://www.ncbi.nlm.nih.gov/pubmed/24072665

CONCLUSION:
Regardless of concomitant anticholinergic use or etiology, onabotulinumtoxinA significantly improved UI symptoms, urodynamics, and QOL in patients with UI due to NDO. OnabotulinumtoxinA was well tolerated in all groups.

did you have the treatment and did you see any results?
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby questor » Mon Sep 30, 2013 8:33 am

DougL wrote:did you have the treatment and did you see any results?

Hi, I'll be treated tomorrow morning at 8am. I'm told it can take up to a week for the benefit to stabilize. I'll be taking my last (hopefully) tolterodine tablet tomorrow morning. I'll update when things settle down. I'm surprised there isn't more interest in this or talk of personal experience. Perhaps I should have posted this elsewhere than the http://www.thisisCCSVI.com forum :wink: .

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby Barry » Sat Oct 05, 2013 12:05 pm

Hi dc10

Good timing. I went to a thingy at the local MS Society today and they had a urologist speaking about it

He said the protocol to see if one qualifies as a good candidate are. You've tried all the drugs with little success due to side effects or they just don't work. That you're basically healthy enough for that type of surgery.

It takes about 45 minutes and you're under a general. You might expect blood in your urine for a day.

For some people, their bladder needs time to give you the it's time to pee signal. That's where the self-catheters come into play. Infection and tissue damage are common problems and antibiotics........ For most of this group it's a few days of dealing with self-catheters but others aren't as lucky.

He spent quite a bit of time talking about self-catheters and the risks. If he mentioned a percentage
of folks who have to go through this, I didn't catch it.

He Said it's pretty much considered last resort surgery. You can expect to have to go through this twice a year.

In Ontario if one doesn't have coverage for this, the Botox folks pay the freight.
I run a fun little forum site – www.CanadiansTalk.net – check it out. You don't have to be
a Canuck. :)
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby questor » Thu Oct 10, 2013 11:54 am

It's now been over a week since I received my first Botox bladder injection. The treatment was performed at a local outpatient surgery center, I was fully anesthetized and was home again in a couple of hours.

I now am able to hold much more fluid in my bladder (more than twice the pre-Botox amount), and have yet to have an "accident". It took about 4 days after the injection to experience this benefit.

The downside is I now have to self-cath five times in a 24-hr period (4 times during the day, and once at night). I was doing this 3 times daily before the procedure so this is not a big deal for me. But, now I can expect to seldom have an accident, and I now sleep through the night (except for once a night when I set an alarm to self-cath), and my equilibrium is now much better as I stopped taking tolterodine 4 days after the procedure.

I used to be able to initiate some urine flow by applying pressure to my lower abdomen, now this often doesn't work.

So, there are trade-offs. I now have to plan my day around when I need to self-cath (about once every 4.5 hrs). But, given that I am now less tied to the bathroom, and my balance equilibrium is better, this was a good choice for me. I can expect this benefit to last about 8 months or so before I'll need another injection.

Unfortunately, I am now very dependent on having a ready supply of catheters on hand. If I run out, for whatever reason, I'd need to visit a hospital emergency room or critical care facility to have my bladder emptied.

Before the injection, I needed to use the bathroom at least once an hour, if not more, and nights were often pretty sleepless for me and my spouse.

--Tracy
Last edited by questor on Fri Oct 11, 2013 7:55 am, edited 1 time in total.
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby questor » Thu Oct 10, 2013 2:24 pm

Barry wrote:He Said it's pretty much considered last resort surgery. You can expect to have to go through this twice a year.

I don't agree that Botox bladder injections are a last resort. Suprapubic catheterization is a non-reversible invasive surgery that is performed to treat bladder retention and leakage in those that can not perform intermittant catheterization and are at risk of kidney failure. I know people with MS for whom suprapubic catheterization has been a life saving procedure.

Botox wears off with time, with no harm done. I don't consider that "last resort". But, it is true that botox treatment would not be tried before anticholonergic meds (detrol, etc).

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby trrish » Mon Apr 21, 2014 12:26 pm

I signed up for a trial for people w/MS and Botox. It's not making my face look any younger, but you should see my bladder. (My standard joke.) The trial is testing the dosage -- there is no question that Botox works for neurogenic bladders; it's just about how much you need.

It has been life-changing for me. Night and day! When my trial is over, I will pay for it out of pocket if I have to. It's been that good. I am not afraid to go out anymore. I don't live with constant anxiety about whether there is a bathroom near me. I started it at the end of December - it's been 4 months and going strong. If I have any say over it, I will never, ever go back to my pre-Botox life.

Some clarifications - this isn't surgery. It is (for my dosage) 20 injections directly into the bladder via the urethra & a catheter. They did not put me under GA - they gave me lidocaine 'down there' but it did not help with the pain. I've heard some others say they went under for it. I did not like the procedure. I've asked for real painkillers the next time. I'd prefer not to have GA, but would really love some pain reduction. Even though it was a rough procedure, the results made it quite worth it. In the first 6 weeks or so, I thought I was noticing some differences with orgasm, but I don't notice that any more. For me, there have been essentially no side effects.

For the record, I had been using Vesicare for many years, Detrol before that. Neither were working for me anymore, and Vesicare seems to cause really intense nosebleeds in me (I guess it really drys out my nose). Once I got the Botox injections, I stopped the Vesicare. No more nosebleeds, and the Botox works so much better. This, combined with Gilenya/Fingolimod, has seriously changed my life. I have had MS for 20 years. The past 6 months have been the best I've ever done with it. For years I was anti-Western medicine because I got zero relief with MS. I've had to change my tune.

I'm very grateful for the improvements I've felt. I continue to do my usual MS management with diet, supplements, lifestyle. I never imagined that my MS experience was going to improve so much.
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Re: Has anyone here had BOTOX injections in the bladder ?

Postby JanetF » Wed Apr 30, 2014 11:53 am

Trish glad to hear you've had such a positive experience, and I appreciate the detailed procedure description. I had no idea how they did it. Do you have to cath often? I was dismayed to read another persons description of having to do it so often, I have found that the less often I self cath, the less accidents I have.
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