can botox help IC?

[sweetangel2080]

thought this was just for OAB? I'm scared about the retention possibility...

[IcyAngel23]

No it's for IC. The retenion is rare and can be fixed most of the time with an alpha blocker like flomax or cardura. It's only temporary and for the most part the IC sypmtoms are worse than the retention. Botox is actually really safe and has little if any side effects compared to Elmiron. I had botox done twice and it helped my freq/urg but not my big problem which is pelvic pain.Some are helped with pain. I happend to have a severe case so my pain is different from the average Icer.

[ICNDonna]

I believe it's still being used for IC on an experimental basis. Some have reported improvement; others have experienced problems with it.

Donna

[deborah bush]

Botox is used for Overavtive bladder. My doctor in Flordia is looking for patients. To do a 3 year trial study on botox. It is for urgency&frquency. You would have to pay for you travel expensive. You would get botox every 6 months. They give the botox in the doctor office. If you are interesting you can e-mail at deborahbush1952@yahoo.com:hi:

[IcyAngel23]

Botox I guess it still considered experiemental but its been around for awhile in the IC community. I had my first treatment done over two years ago and even then there was alot of people who had already done it.So it's more widely used these days and is even encouraged over the Interstim. I'm not sure what problems others have had but the only side effect that I experienced or read about in studies is retention. It occurs in less than 2% of patients and it depends on how much your dr uses. There isn't a standard amount of units to inject so it's up to the dr. So the higher the dose the higher the risk. Now if your putting botox in anyother place other than the bladder then yes there are alot more risks. The pelvic floor is the one were you have to watch out for. I'm just saying you shouldn't be scared to try new treatments and with everything there are risks. Elmiron which is the standard of care for IC in fact comes with alot more risks and side effects. I just don't understand ICers who are scared to try new treatments. My IC has taken over my life and I've pratically homebound. I'm the kind of person who has to find relief in any mean possible.
I'm currently on Cyclosporine A which is experimental and used only on severe ICers. So far there are three people in the US that I know are taking it for that purpose. If each one of us was afraid to try new treatments then there wouldn't advancements in the IC community.

[sweetangel2080]

thanks,
icyangel i understand what you mean but so far I have only tried Elmiron (worked to some extent but in major 2 month flare- homebound), ditropan and a anthihistamine- oh and cystistat which helped a little. I just think maybe I should try other things first. Especially since my main symptoms now are the constant urge and sensitivity to even simple foods, rather than extreme frequency.

Anyone else used botox? would love to hear from more people!

[deborah bush]

I use the botox and I have good results from it. I did the 3 year trail study with the doctor in Miami. I had the first 3 injections in the OR and the other in his office. I just finished the study in Oct. and my injection of botox I had to pay for it. My insurance will pay for it, but i have $50 co-payment. Deborah Bush from Ohio:hi:

[purpleviolet]

The nurse at the U of W in Seattle told me they are in the process of doing a phase I Botox study. They're also studying amytriptaline (don't ask me why - hasn't that been done enough?), but I'm not doing those studies.PV

[Katherine]

If qualified you get to be on the trial but I did not qualify because of other medicial.
katherine

[Daffie]

:smile tee I have had botox injections nine times over the last four years. I was probably one of the first to try Botox for IC and for several other problems. I have had my bladder, urethra, vestibule glands, bartolin glands, pudendal nerve and trigger point pelvic floor injections. It has helped with IC, Vulvodynia, Vestibulitis, Pudendal Neurapathy, and Pelvic Floor Dysfunction. I have had little side effects from the injections. I do still have symptoms, only they are much more manageable now. I had so many side effects from most every treatment I tried and found Botox the only treatment that has brought relief to point I can function.

[glassd18]

I do not know anything about this treatment for IC. Where do they inject the botox for IC?

[kimberlyJB]

Can you tell me if you have to self cath after having botox treatment? thanks,
Kim

[Daffie]

I have had the procedure nine times and haven't had to cath afterwards since my uro started injecting the urethra too. Only had to cath a few times after the first two procedures.

[kimberlyJB]

that's great. I have so many questions about botox. I guess I will have to talk to my uro about it because it is beginning to seem like an option I am interested in.

[deborah bush]

Katherine, Why could you not be in the botox trial study?? Deborach Bush:hi:

[IcyAngel23]

Katherine-
You don't need to be in trial to get botox done. Some of the trials are very picky about subjects because they want to get the best results so just ask your dr. I had it done when there weren't trials being done yet. Don't let the reject get you down and think you can't get it done. I don't know the whole situation but ask your dr if he would do it or find another who will. Good luck to you.

[Katherine]

Because I have had to many other treatments that did not work.
Interstim and several medicines and my bladder was even lifted. So they said I can't be in the trails . My insurance will not approve experimental things.
So I do not know what to do now.
katherine