Botox, maybe a new promising treatment

[Marlana]

It looks like alot of people had some help with botox. It would be nice if another treatment was added to the list. Has anyone read the Optimist to see what is in the works for treatments. I read some of the transcripts here and some of the DRs. feel that in the next 5 years or so, there may be some treatments that work better. SInce that APF study,[ I think that is what it is called**, things could look better for IC. Maybe they will develop a drug to stop it in it tracks..Here is to looking to the future.

Marlana

[lotsofgirls]

Hi Marlana,
I haven't tried botox yet, I did pelvic floor therapy and it worked really well so I put off anything experimental for the time being. Although I had a droopy eyelid (no one sees it but me, but its driving me nuts) so I am thinking of botox for my face :dance:

Cath

[ICDee]

I am scheduled for my first Botox treatment on July 6th. I wll also have the distention with it. The urologist I am using in fantastic and actually listens to what I have to say. And gives my options.
It is now FDA approved.

I had the in office cystoscopy done last week wasn't bad at all - I did flare for a few days afterwards.

So fingures crossed and prayers that this helps.
:pray:


Deanna

[Marlana]

Is Botox the one that give alot of relief for a long time based on a study? I thought this was about the only new promising thing in the IC future? I hope it works for you. Let us know.

[sleepyangel30]

i thought botox was out already:)

[Marlana]

I am still new to this...so maybe it is....

[sleepyangel30]

Some icer's use the botox treatment. Some find relief some don't.

[ICDee]

Botox has been out for a long time but as a experimental treatment. Meaning insurance would not pay for it. According to my uro the FDA approved it for IC usage 6 months ago. It should last about 6 months and then with each additional treatment they should last longer and longer inbetween treatments.

He has had 75% success rate using this treatment. Of course there is no guarantee that anything will help/cure.

[Marlana]

That is certainly high stats for Botox. That beats elmiron. How does it work, do you have to go for weeks of shots prior to relief or how does that work..I wish youthe best of luck. 75% is a great rate. Best of luck... Are you severe IC or moderate or mild. I am really happy for you. I wonder why more DRs are not doing this?

[SharonA]

Expand your search on this topic and read the posts from Flore. She is or was the moderator for this topic. I believe she has been using Botox for some time now. She would be the one to ask. :)

[CinSin]

I have had Botox injections four times now with pretty good results. However, I don't get longer benefits with each procedure. Each time I notice it wearing off right about 3-1/2 to 4 months and by six months I am more then ready to have it done. The good part about it is that when it does wear off it does so gradually. This last time we only waited five months between injections. I heard just the opposite of the effects, I have heard that your body could develop antibodies against the Botox lessening it's benefits.

The first and second times I only had the bladder injected. The third, the bladder and urethra. The fourth, in addtition to the bladder and urethra, I had the trigger points of the pelvic floor muscles and the vestibular gland on the left side injected.

The one thing that I want to make sure anybody that considers this procedure understands is that the Botox injections will not completely eliminate your symtoms. You will still have IC flares and will still have to manage your symptoms. The difference with me is now the symptoms are more manageable.

My insurance companies both paid on the procedure and the Botox each time. However, I still know people who have been turned down by their insurance companies for the Botox part of the procedure. Just last week one lady in our group (who was having it done by the same uro as me) called to tell me her insurance company refused to pay. She is now having the Interstim procedure done tomorrow.

It is not yet FDA approved for IC, it is approved for overactive bladder symptoms of urgency and frequency. Some insurance companies will not pay if the diagnosis of IC is the sole purpose for the procedure.

Check out the Quest Lecture Series on the ICN, Dr. Christopher Smith. You can also do a engine search for Botox and IC - there must be 50 articles on the web on this subject.

Good Luck Deanna,

Cindy

[Flore]

Hi everybody!!

I´m one that Botox helps so much!

I have had 4 times the injections, and as CinSin, everytime is different. I mean, the first time I had the injections only in my urethra, and I was well for 5 months. The second time I had them in the urethra, bladder and vagina, and I stayed well for 6 months. The third time I had in bladder and urethra, and the last one (4 months ago) I had in my urethra, bladder, vagina and pelvic floor muscles

But this time I didn´t have relief, I was all the time in a flare. I was in a treatment for endometriosis and vulvodynia, and my gyno said that both meds would be hurt my bladder, so my uro is not sure if I have been bad because I created antibodies for Botox or because of this kind of medicine

Tomorrow I´ll have a cysto/hydro, without Botox, and with this my dr is going to evaluate if I´ll have the injections again in 3 or 4 months

I was in Houston with CinSin and Dr. Smith, and he is a Dr that knows so much about Botox, so I recomend you that read all the articles that Jill has in this web site

Bye!!

[CinSin]

Good Luck tomorrow Flore - I will be praying that you find some relief.

Let me know how it all goes.

Cindy

[mayray518]

Looks like botox is promising and gives some relief. maybe i could talk my uro into trying it in my bladder and then giving me a few facial injections for half price (only kidding)

[Peggy Anne]

Is botox used for relief of pain or frequency/urgency? Does anyone know which it is most sucessful in helping?

[Flore]

I think in my case helps with the frequency and sometimes with pain

I have PFD too, and Botox helps relaxing my pelvic floor, so when I have alot of problems for empty my bladder I´m of course with pain, and with Botox I can urine better and the pain is less

[curlycue]

Flore,
I am glad to hear you are doing well. I spoke with my URO about Botox she said If I am willing to try it she is willing to but it in? but I am scared.

Me saludas a tu Familia

[Flore]

Hi Ruth!!

When my dr proposed Botox I was scared too, and I was investigating so much, but I didn´t find information about Botox in urinary disease, so I decided to try, I thought that I couldn´t be worse. I tryed and I´m very happy with my decition

Now you have more articles and experience about Botox, so I recemend you investigate and take your decition

Saludos a ti y a tu familia de mi parte!!

[curlycue]

Gracias Flore

[CinSin]

In my case the botox helped with both pain and frequency. However, I do still have pain but not like before.

Cindy