BOTOX NOT APPROVED FOR IC

[tigger_gal]

HI When I tried to explain before that my doctor said that botox was the wrong answer for your bladder, I got dogged pretty bad thru pm's.. because I stated that it was used for cosmetic purposes only and it is only a temperory fix for a problem. It is not long term and not only will it temperorly numb the nerves it can permenatly damage them and cause severe rentention in your bladder. I looked it up in thru the FDA approvals and NO where in here is it approved for IC.

On April 15, 2002, the FDA approved the use of Botox injections to temporarily reduce the appearance of frown lines and wrinkles between the eyebrows. The product has already been widely used for this purpose by dermatologists, plastic surgeons, and other doctors. But this approval formally gives the manufacturer permission to market it as a wrinkle reducer.

Here is more information about the approval.

Brand name: Botox Cosmetic

Generic name: Botulinium Toxin Type A

Maker: Allergan, Inc., of Irvine, Calif.

How it is used: Botox is a toxin produced by the bacterium Clostridium botulinum. When a purified form of the toxin is injected into the muscles, it blocks the production of a chemical called acetylcholine, which normally causes the muscles to contract and cause wrinkles. As a result, the injection temporarily paralyzes or weakens the affected muscles.

Botox is available only by prescription and must only be used under strict medical supervision.

Botox was first approved in 1989 to treat eye muscle disorders and in 2000 to treat a nerve disorder called cervical dystonia,which causes severe neck and shoulder contractions.

Basis of approval: The FDA based its approval for this new use of Botox on several clinical trials involving a total of 405 people with moderate-to-severe frown lines between the eyebrows (known as glabellar lines) who were injected with Botox or a placebo.

After 30 days, the great majority of researchers and patients said the frown lines improved or were nonexistent. Very few people in the placebo group saw similar results.

The appearance of these frown lines was reduced for up to 120 days in the Botox group. It's recommended that the drug be used no more frequently than once every three months and the lowest possible dose should be used.

Concerns: The most common side effects after injection were headache, respiratory infection, flu symptoms, droopy eyelids, and nausea. Less than 3% of patients reported more severe reactions such as pain in the face, redness at the injection site, and muscle weakness. These symptoms were usually temporary, but could last several months.

[ICNJess]

Hey Cindy, thanks for the info! I was wondering about Botox!

Hugs,
Jess

[dancemomof2]

Thanks Brat!!!!!!! This is a method that I am not for. The use of Botox scares me to death, especially after seeing a TV special on it. I really feel that if these toxin were meant for your body they would naturally be there for protection. You will never find me dogging you on this subject. Thanks for the info

Leslie

[tigger_gal]

your welcome ladies. it really bothered me that some doctors use this method as a treatment. thats like being told that the interstim is for pain, its not! I may sound very grumpy about this, but we have enough bladder problems why add to it?
Brat

[dancemomof2]

Brat
i wonder if these doc's that use Botox for treatment are paid by the company to push this product? I would hate to think that my doc only gave me this because of a paycheck!!!!!

Leslie

[liz2]

If one is considering the use of Botox, one might want to check with the centers that are using Botox in the bladder for treatment of spasms, incontinence, urgency and frequency, and pain relief--which is, incidentally, a secondary outcome.

To my knowledge, there is no evidence that confirms the use of Botox in the bladder permanently damages muscles. It paralyzes muscles for a given period of time. If any of you have evidence to the contrary, could you please share it with us and cite the source(s). We all would be interested in that material and appreciate the sharing. How else can we learn?

The problems that have occurred with Botox used anywhere, from what I have had explained, have happened when Botox gets in the hands of someone who is not trained to use it. A good example of this situation is the Botox cosmetic parties where the provider injecting the Botox is untrained or is improperly trained.

My cousin is a reconstructive and plastic surgeon and has used Botox since it was first approved by the FDA for cosmetic purposes. We have discussed Botox in detail. He does not concur with the concept of muscle damage.

Of course, Botox is temporary; it disappears from your body in 4 to 6 months after injection. But aren't bladder instills temporary, too?

I would hate to think that the statements made herein would discourage the use of Botox by someone who really could benefit from its experimental bladder use. Everyday, we read, on these boards, someone stating that he or she is trying an experimental procedure or waiting to take part in an experimental trial.

All of us may want to keep in mind that Elmiron and DMSO are the only two IC specific treatments/ medications approved by the FDA. I have not seen where Neurontin and many other frequently used medications are FDA approved for IC use. IC is frustrating to treat, and numerous other medications--not FDA approved--have, are, and will be used for its treatment. Why not stay open minded about Botox. It may provide yet another treatment protocol for IC.

Before the use of any experimental procedure, one needs to read and weigh all of the pro's and con's and make his or her own person decision. I have done this with any IC treatment protocol that I have chosen. [I will honestly report that I have had both successes and failures.] This education process should, in my opinion, include discussions with physicians and patients who have used Botox for cosmetic purposes, back procedures, and bladder procedures.

[Flore]

In my case (and in the case of the people in México that don´t have any medicin to treat IC), Botox is the only treatment that give me the oportunity to continue with my life. I still have flares, but after botox I don´t have to be at the hospital anymore, and they are controlables

When my dr told me about the possibility of treat me with Botox, of course I didn´t want, because I didn´t know anything about Botox, so I had to investigate

In fact, in México only exist 2 drs that are capacited to inject Botox in bladder and in pelvic floor (of course this made me feel more scared), one of them is my dr

My dr have put Botox in 70 patients (more of them are paralytics (??) and with Esclerosis M.), 4 of them have IC, and in the case of the patients with IC, only one reported that Botox didn´t help him, another one was programated to remove her bladder, so she prefered prove with Botox, now she has her bladder and had the second injections last week

So, I thought that I didn´t had anything to loss, and I´m very happy with the decition I took

My dr doesn´t reicive any money from the laboratory (Allergan)

I´m agree with Liz, the majority of the meds are not aproved by FDA and we use them

In México Botox is aproved, but we don´t have the other medicines, so I am very grateful with my dr and Botox

I am sure that Botox is a short term treatment (like hydros) and is not going to give me cure. And I´m sure too that I´don´t have a 100% relief, but IN MY CASE is a very big think that I can drive, and work, and attend my support group and my kids

Before Botox I only worked half time, with alot of pain and I was in the hospital 6 times (in 1 year)

[dancemomof2]

Liz,

I by no means want to discourage anyone from what they feel is right for them. This was strickly my feeling on BOTOX for IC. But I do agree with brat that something as damamging as botox is should be used under strict caution. To me using Botox is like leaving raw chicken out for a few days and taking your chances when you eat it.

Leslie

[liz2]

As Flore said, we try to do what is right for us individually. Also we can disagree with tact and without anyone getting their feelings hurt.

[tigger_gal]

Liz and Fllore,
My apoligies for making this sound like you should not do this, I wanted to make sure everyone was aware of what this was all about, I firmly agree that doctors using botox for IC dose not inform the patient fully on this product, my concerns are it weakens and paralizes. I am glad that your cousin has informed you and sorry I missed your post and agree that you should do a check on who is using this botox, and knows how :)
flore I am gld it works for you...
Brat

[liz2]

No problem, Brat. Maybe everyone should try to come up with a list of specific questions to ask doctors if someone were considering Botox. That would be a very proactive approach.

[liz2]

My understanding about the use of botox in the bladder is that it does temporarily paralyze the nerve ending, thereby giving relief from spasms, urgency, frequently, and many times relief from pain.

Botox is contained in the organ or location where it is injected. It does NOT migrate. Within 4-6 months, botox is out of your system. I have not seen any published evidence that botox weakens muscles. If you have that information, could you please share it with us; we all need to stay well informed about all protocols used to treat IC.

I am sure you will find botox advocates and opponents--just like you do with any procedure used to treat IC. I personally would like to hear more from individuals who have used botox in the bladder.

[ICNJess]

I was glad to hear about the other side of Botox. Just like I was glad to hear about the other side of Interstim. There are posts on the Interstim part about the downside of it. And I'm glad. Thanks again, Cindy, for the info.

[Flore]

I know that everybody is different, and one treatment works for somebody and doesn´t for others. So for me Botox works and for another doesn´t

I´m agree with Liz, I think that in this board we can say our feelings

But I want to ask, if somebody has the experience of the use of one treatment I really want to listen, or if somebody has the link of the article where read any information about it, I want to read it too

Because I think that with the information that Brat published, may be one patient that her/his only option can be Botox, could be confused or decided to don´t do it

Sorry if I don´t explain me well!!

[ICNDonna]

It wouldn't be a surprise to me to find that there will be trials using botox in the fairly near future. I do know it's being discussed in the urology community because my urologist mentioned it as a potential trial treatment for IC.

Right now it's being used by a few doctors only and the results are looking not too bad. I am very hopeful that one day soon a really effective treatment will be found.

I'm glad to know that Flore, and some others, are being helped by this therapy.

Donna

[liz2]

Flore, I understand exactly what you are saying. You are afraid that the negative discussion of botox may scare people and cause someone who may be helped by botox to change his or her mind about even considering botox as an option.

I think Cindy in her posting under a different category did an excellent job of showing us the other side. Her positive results, along with yours, Flore, should provide some much needed balance to the discussion.

Everyone is entitled to his or her own opinion.

[deborah b.]

DONNA THERE IS TRAIL STUDY GOING WITH MY DOCTOR IN FLORDIA. I AM IN A 3 YEAR TRAIL STUDY WITH MY DOCTOR. I AM SCHEDULE FOR ANOTHER BOTOX INJECTION IN OCT. 13TH.

BRAT I WAS TOLD OF THE RISK AND SIDE EFFECTS OF THE BOTOX BEFORE I SIGNED UP TO DO IT!! IF BOTOX WAS OFFERED WHEN I DID THE INTERSTIM BACK IN APRIL 2001 I WOULD HAVE DONE THE BOTOX BEFORE I WOULD HAVE DONE THE INTERSTIM. DEBORAH

[tigger_gal]

Hi All,
I am glad that the Botox is helping some of you and I think it's important that you know the the pros and cons :) . I think It would be great to be able to go thru a study and get relief for pain for IC. wink .
Debroah, keep in mind that the interstim dose work for some :D , I am greatful for the relief that the interstim has given me for frequency and urgency, some had problems :( , just like people had problems with Botox.
Too bad you opted to do the interstim first before the Botox, it might have made all the difference in the world to you, I sure wish the interstim would have been a success for you :) ...
then you would not have had to go thru surgey twice...
Liz, Thank you so much for your post.
Brat

Lizand Flore, I pulled this up from the first post that says it will weaken the muscels... I will look and find where I pulled all the Botox info, I will let you know. because I asked about it before I got my intestim 4/16/03.
(from first post: How it is used: Botox is a toxin produced by the bacterium Clostridium botulinum. When a purified form of the toxin is injected into the muscles, it blocks the production of a chemical called acetylcholine, which normally causes the muscles to contract and cause wrinkles. As a result, the injection temporarily paralyzes or weakens the affected muscles.)

[Kelli]

Ok here are my thoughts on the Botox injections. There are so many things out there for IC patients to try to help alleviate the pain, urgency and frequency. But for those of us who the traditional therapies don't work on, we tend to open our minds a little bit. If this Botox can give me 1 ounce of relief, it's worth it. Because nothing else has helped. I don't want to spend the rest of my life on narcotic pain therapy. I'm 26 years old and eventually, I will come to a point where there is nothing else that is going to help me as far as pain control. Everything that we put into our bodies to try to help with this miserable disease has it's pro's and con's. But like all of those things, like the interstim, and the instills, they are all a ray of hope for us. That is what Botox is. It's a ray of hope for those people who have tried everything else with no luck. Or maybe they aren't ready for something like the interstim yet and want to try Botox as a last ditch effort to relieve their symptoms before going to something as invasive as the interstim. I think if it helps you, thats wonderful, if it doesn't, than it doesn't. Not much we can do then other than go to something else to try as another ray of hope to be able to be ourselves again. Just like the whole Coral Calcium debate. Some wouldn't go a day without it, others feel it's a big crock of bull that some company is just trying to make money on a false hope. I believe I have had IC for about 8 years now. Diagnosed for 2. And honestly, I feel no better today than I did 8 years ago. I think we all have this feeling inside of us that prays the next thing we try will fix everything. When you live your life, day to day, in the toilet, in severe pain, you tend to try anything and everything that says it will help you. I have done it myself. I tried everything out there that said it would help me, only to be disappointed when it didn't help. So, I think if my insurance covered Botox, I would try it. You never know until you try something if it's going to work or not. I'm very glad for those people who it has helped, and in just those few people, it has made a world of difference in their lives. So, why not try it??? If after a few treatments, you have no relief, stop. I'm sure the damage Botox may cause is after years of treatments. I don't think the FDA would approve a drug that damaged your nerves after a few treatments. No, right now, Botox is not approved for bladder use, but, they are in the process from what I understand. I think that if it helps even half of the people who do the treatments, it's worth it. heck, Elmiron, the ONLY drug FDA approved for IC, doesn't help everyone. Even the instills. Lets take a medication that will literally burn the skin off and stick it in our bladders. I'm sure after so many years of that, it will have SOME negative impact. But, during those several years, some patients find relief of their symptoms. As I said before, if it helps, go for it!

[liz2]

Brat, go back to your original post. What you copied said:
---------------------------------------------------------------------------------------------------------------------------
As a result, the injection temporarily paralyzes or weakens the affected muscles.
---------------------------------------------------------------------------------------------------------------------------

Notice the adverb modifier "temporarily;" it modifiers both "paralyze" and/or "weaken." I interpret this statement to read temporarily weakens muscles.

I have not seen anyone who has had botox post that they have had permanent weakening of muscles. The temporary paralysis of muscles does occur because there is no way to separate out the nerve endings in the bladder from the muscles. Everything does reverse in 4 to 6 months. I have done rather extensive research on the use of botox in the bladder.

Why don't we wait and get this question fully answered by our botox guest speaker?

[tigger_gal]

Dear IC family,
My appoligies to you for my post on BOTOX.... for caring enough to let you know the down side of this product.. I think if it works for you thats great. However, seeing that they used toxins I thought it was important enough to share with you.....
Brat

my personal thoughts on why not try it? because I have no intentions on letting some one stick needles in my bladder or my uterthia....

[darlene]

Let us all hope the RTX trials go well, no needles, toxins, or germs are involved. I think that is a good thing.

[deborah b.]

I KNOW THAT I KNOW NOTHING ABOUT THE RTX BUT I KNOW ABOUT THE BOTOX. I HAD NO SIDE EFFECTS FROM THE BOTOX AND DID NOT GET ANY KIND OF INFECTION FROM THE BOTOX INJECTION. I AM SCHEDULE AGAIN ON THE 13TH OF OCT. FOR ANOTHER BOTOX INJECTION. DEBORAH

[liz2]

I have several questions where I would like to have input. I would like to hear first-hand experiences from actual botox participants. I am not interested in speculation.

How immediate is the bladder spasm, urgency and frequency relief? Does pain relief always occur, or is it an occasional by product of the botox injections? Does the amount of botox used make a difference in a person's response? Or is this very individualized like our responses are to different food items?

I have noticed that urine retention is mentioned in some of the postings on this board. What amount of TEMPORARY retention occurs during the first month to two months following botox injections? Both bladder nerve endings and muscles are injected, because, as I understand the research, you can't totally separate out the two when doing the injections. My perception is that this may lead to some retention.

Is the retention severe enough at first that catheterization becomes necessary? If so, for how long? Again, does the amount of botox used make a difference in the level of urine retention?

Since botox disappears from one's system in 4-6 months, how long does the botox provide relief? Is there relief in areas other than bladder spasms, urgency, frequency, and pain. What about urethral and pelvic floor relief?

I am sure our guest lecturer will address all of this; however, I would like to hear about personal experiences so that I can put the guest lecturer's material into a better perspective.

[Kelli]

Brat,
Don't be sorry for posting your opinion on something. We are all entitled to do so.

[liz2]

Brat, no need to apologize. I just believe that we need to look at ALL sides of botox, as we should with any IC treatment. There are a number of areas about botox that need discussing--not just one or two. I really would like to hear more about botox from individuals who have had multiple experiences with botox injections. We don't all respond to things the same way; if we did, IC would not be so hard to treat.

[Flore]

Hi Liz!!

I can answer your questions, but like you, I want to listen another experiences

I want to explain that all that I´m going to write is IN MY CASE, ok??

1.- How immediate is the bladder spasm, urgency and frequency relief?
-In both injections I began to feel relief 12 or 15 days after the procedure

2.- Does pain relief always occur, or is it an occasional by product of the botox injections?
- I had more pain relief with the first injections, when my dr only put them in my pelvic floor
With the second injections, I had pain relief (IN MY BLADDER), but less than with the first ones

3.- Does the amount of botox used make a difference in a person's response? Or is this very individualized like our responses are to different food items?
- I asked my dr this question, and he said that he belives that the ideal dose are 100 units

4.- What amount of TEMPORARY retention occurs during the first month to two months following botox injections?
- I never had retention, my dr said that is because of the injections in the pelvic floor and the catheter for 2 days
He injected a patient that lives far away from México city, so after the injections she had to take the ariplane to her home, and my dr didn´t leave her the catheter, when I called to ask how was she doing, she told me that she had a lot of retention for 2 weeks
May be is a coincidence, may be is not....

5.- Since botox disappears from one's system in 4-6 months, how long does the botox provide relief?
- The first time, I had relief for almost 5 months. With the second time, I only have for 3.5 months
I had a hydro 2 weeks ago, and I feel now very well, I don´t have pain in my bladder, or spams, frequency and urgency. BUT I still have trouble to void, and my dr said is because I need again the other injections in my plevic floor

6.- Is there relief in areas other than bladder spasms, urgency, frequency, and pain.
- I only had relief with these symptoms

7.- What about urethral and pelvic floor relief?
- For my is great, with botox I don´t have problems in my pelvic floor or urethra (the spasms and pain here dissapear completely)
With the second injections, the dr put Botox in my vagina too, and it helps alot with my vaginismu, and I don´t have pain with sex

I hope I can help you, and I want to listen for another experience

[tigger_gal]

Flore, thank you for the information, its nice to know that you are getting relief from this treatment. hope it contiues to help you
Brat

[mayray518]

Like anyone else suffering from IC, i was pretty willing to try anything to get my life back. Sometimes there is a tendency to want to feel normal again that you dont do all the drug history homework that one is supposed to do. I tried DMSO for a year and it helped me and many people are opposed to that. But if you are laying in bed 24/7 and have no life the risk of a certain drug is something you have to weigh. And I mean a legal prescribed drug. I would be willing to try botox but, in many cases, it may not be covered by uros as it is not approved for IC. There would be a problem there as I have spent most of my money during the past 10 years on meds, bills related to IC. But if botox were approved for IC use I would try it. I do well on the elavil but still have to deal with the side effects.

[Dianne]

I had reached a point where I didn't even care if it was safe, I was so desperate although I did research botox first, it was worth it to me to try it. Unfortunately I bombed on the botox but I had to try it. I have doubts about clorpactin too but since I've had little quality of life this past year, I'm having to try some things on my "never" list.

[mayray518]

I hear ya dianne, i would have dont the same thing

[IcyAngel22]

Don't knock botox if you haven't tried it. Thousand of IC patients all over the world get relive form botox. I was informed that Botox has been approved in the last 6 months for IC I could be wrong. I've treid everything for IC I have the interstim and everything else under the sun. Botox may not be for the mild ICers but us who have IC really bad are given hope and the results other treatments lack. I was fully informed by my doc and we both explored it together. He has dr friends who have been doing botox for a while in the bladder. Just talk to Cindy and Flore. I must say this Tread paints botox in a bad light and it is the only treatment where I didn't have side effects. A little retension at first but that is very temporary. Never needed to cathaterize for the problem. As for the long term botox has been used for many other reasons other than cosmetic like spinal cord injury. Knocking botox when you don't have the experience of such a wonderful drug given you back a piece of the life IC steals is wrong. It has been the least invasive procedure and with results. You can't argue with results. Botox isn't scary, staying home because you are in so much pain and can't sleep due to bathroom trips is scary. I'm 23 and I'm fighting IC head on I'm not giving up. If people like Cindy, Flore and myself opted to sit around waiting 10plus years for it to be 100% safe then I would be waiting 10plus years to starting living again. I'm not trying to be mean but I'm offened by outsiders coming into a close group of botox patients and trying to rain on our parade. Botox is the answer to many of our prayers. You can spout all the research you want but real live people are living proof that botox is effective. And the crack about dr.s getting $ to pressure patients is absured. My doc ordered it from the company so I would only have to pay $500 instead of $1800. If you think your doc is in it for the money then keep looking for a doc that respects you. Sorry to get pissy but I just don't agree with a botox bashing forum. It may seems scary but I would try anything that would give me tremendous results like botox. When you opt for a treatment you do research and talk to others who have tried it so the thread implied that people who try botox are uninformed and stupid. So please stop posting negative things here in the botox forum . If you had negative results with botox I would listen because you have went thru it. It may not be for everyone but from what I've been told less than1% show no improvement. My intension isn't to be mean but to be firm. Flore what you posted was great and thanks.
Kristin

[CinSin]

I believe everybody is entitled to their opinion. I have had Botox done five times and would just like to take a few minutes to share some facts (in my case only).

I had tried every treatment option available to me and had been in debilitating pain for nearly 10 years. In September, 2002 I was offered a new experimental (off-label) treatment for IC. In 2002 there was very little known about this procedure and I certainly was more then a little apprehensive about the entire ideal of Botox in my bladder. This very new urologist explained everything to me. He explained the risks and possible side effects, and he explained the possible benefits. He left the decision totally up to me and did not try to push me into doing anything. He simply listed my options, explained each thing about each and I made the decision. In fact, he wasn't too sure it would help me and expressed his thoughts to me.

I had the first round (200 units all in the bladder) in Oct 2002 and I have to say that it was probably the least effective treatment of them all. I did have problems with retention. Other then the retention - the botox did not make my problems worst. I just used a catheter and was thrilled to have some releif.

The second time, the uro used 100 units and it was much easier and I didn't have much retention. I had much better results but still had problems with urethra spasms, pelvic floor spasms, and vulvodynia.

The third time, the uro used about 150 units and injected the bladder and urethra. Again better results then the first two rounds. Hardly any retention and more pain releif.

The forth time, the uro used 200 units and injected my bladder, urethra, and pelvic floor muscles. Let me tell you, I had to pester him for months about trying it on the pelvic floor. But in May 2005, he finally agreed and injected the pelvic floor too. For the first time in years I had much less vaginal swelling and irritation. Just that made the entire procedure worth it.

During the last three years I completely replaced all my doctors treating me and picked a team of doctors that all know about IC and related conditions. All of these doctors are some of the best in Texas. My internist, pain specialist, and gynecologist all believe that I am doing the right thing for me. They all support the urologists treatment plan and support my decision to continue the treatment.

In August 2004, I went to my gynecologist about vestibulitis and vulvodynia problems. This was the first time I had gone to see her (she specializes in vulvo-vaginal disorders). I explained to her all of my problems with pelvic pain and about the botox. How it benefits me and what problems I was still having. She told me about a lecture she had gone to where they were using botox for vestibulitis and vulvodynia. She suggested that I speak to my uro about having the injections for it when I have the injections for the bladder the next time. I talked to him and he was a little hesitant but did agree that it wouldn't hurt me and probably wouldn't be as effective as in the bladder.

Nov 19, 2004 I had round five done and had 300 units injected in my bladder, urethra, pelvic floor muscles, and this time the vestibule and bartolin glands. With help from the urolgoist, pain management specialist and gynecologist I know how to address the increased symtoms during intimacy and for the first time in 12 years I have been able to have almost completely pain free intimacy with my husband. I still have pain/problems from the IC, vulvodynia, vestibulitis, pudendal neuralgia, and PFD. I will never be completely pain free but I can manage my symtoms and for the most part live a fairly functionable life.

I prayed for a doctor that would work with me and help me anyway he could. I thank God for answering my prayers with leading me to a team of doctors that filled that request.

I think the most important thing is that you find a team of doctors that can work together and they with your input figure out what is best for you. I tell people not to expect miracles when trying botox. It may take a few times to figure out your trigger points and tailor the procedure to fit your needs. That's the best thing about Botox, it is injections and they can inject in trigger points and each time eliminate more til they find the right points that best accommodates you.

It does offend me that anybody would suggest that my uro would decide to do a procedure based on payment from the botox company. I believe my uro to be an honest and compasionate doctor. I truly believes he only treats me with options that he believes is best for me. I am very grateful that he is willing to hang in there with me and alter his treatment to my needs.

Cindy

[vm]

The bulk of this discussion took place a year ago so some of the opinions posted here may have changed - I don't know. I didn't notice the dates at first, but these are quite old. :)

[dancemomof2]

I noticed this was a old thread, i am sure people feel differently after more research and more sucess stories. I personally swore I would never ever do Interstim and am about to get one.

[andcohen]

Thank you to each & every one of you who contributed to this ''Botox Question". I doesn't matter if someone agrees, someone doesn't agree, nothing is ever going to make us all happy & wanting the same thing. We will always have different people with different exeriments & different knowledge. I embrace any info give here to help weigh up the pros & cons.
I have just come back from my support meeting today in Melbourne where Botox was a major disscussion there. I had been to a URO that was completley against the idea of botox, his concern is what long term damange botox does to the bladder??? And I guess they carn't answer that yet as they don't know?
However the DR whom spoke at our support meeting was quiet for, or at least using it as an IC experiment. And no this is by any means a cure & would have to be repeated every 6-9months.
I thank you Brat for shareing your story & info with us, along with everyone else who had their say. This is one place where EVERYONE should be able to express their thoughts, opions & knowledge. I know that I am one person who receives it with open arms.
Thank you
Andrea :kissing:

[andcohen]

WOW I also just noticed that the original post was posted along time ago.
I guess as Botox is now being so widely looked at it is a good time to talk about it again.
Andrea

[Nancy178]

In 2004 I had the Interstim Implant and it didn't work for me. It was a very painful operation to boot, let me tell you and I'm a pretty tough old gal! But when ya have to go to the bathroom every 5 minutes and sleep on the toilet, one will try anything, and I did. I am having it removed July 22nd of this year.

My doctor, who is well known all over the US, Dr. Kenneth Peters, is a very recognized doctor in his field of experimenting with IC and has recommended me for a Botox Trial and I have said yes.

He did warn me of the con's. That I may need a Catheter if it doesn't work, but if I can't feel the catheter because I'm frozen down there, then I welcome a Catheter!!!! The reason I don't wear one now is because it burns me like heck and it's the most painful thing I've ever had attached to me.

I actually have been wanting my bladder removed in order to have a life. When Dr. Peter's told me that I may have to have injections twice a year because Botox doesn't last long, and acted so sad about it, I laughed and told him that one day would be a miracle for me.

Because I never know when I will have a bad day (having to go to the bathroom every 5 minutes and this is the truth, not an exaggeration, and on good days about every 20 minutes), whenever I'd go shopping, I'd have to leave the shopping cart, only to find it gone when I returned. When I asked what happened to it the clerks would say, they thought I abandoned it. Tired of that happening all the time, I began wearing diapers. Plus being stuck in traffic these days is not fun when you have to go!!! So Depends have been my new best friend and I have learned to use them, no matter where I am and nobody knows what's going on.

But I still can't do everything that I want to do. You can only go so many times in a diaper. The same with a Catheter. It needs changing. And this is fine. It's better than nothing. But to be able to go for an hour or two, and the thought of only a few times a day is like a Fairy tale to me.

My friend of mine came over the other day and visited for about 5 hours. She never had to go once. And didn't even have to go when she left. I looked at her like she was a rock star. I was in "Awe" of her.

Because I am in the "Public Eye", or was before this happened, I am willing to try anything in order to get back into the career I once had. So Botox is very tempting to me to say the least.

What scares me is this. What happens if I get Botox and then I can't go, because the muscles won't work as they did before, and I have the same feeling that I have to go! But now I can't. The only way I can relieve that feeling, that pressure, is to go. But what happens if I can't now and I still have that same feeling? I know I'd go crazy. It would be more than I could bare!

But I have awhile yet to make up my mind.

If anyone has had Botox Injections, I'd like to read about it. Your experience. Were you as bad as me? If so...how are you now!

Gosh if only I knew ahead of time. Scary not to know what will happen.

Thanks

[jleblanc]

Nancy178...
I had botox on 5/11, and for me, it did not work. I hesitate to discourage you from trying it though, since I have heard it works very well for a lot of people. The week after I had it was one of the worst I can remember, and now, 7 weeks later, my frequency is unchanged (I average from 30-40 times per day), and I do have to "force" myself to go. I believe this has served to further irritate my bladder. I am taking Flexeril among other meds, and it does not seem to helping me a lot. I also take vicodin, darcalma.....I tried Elmiron with no success and have done instills of Elmiron as well as DMSO in the past with minimal success. I am now altering my diet to try to get some relief. In addition to typical IC triggers, I am in the process of eliminating gluten to see if that may also be a trigger for me. Basically, nothing much has given me relief, so I am really just treating my symptoms now. I would consider the Interstim, but because I can never have an MRI if I get it, that makes it quite a huge decision for me. Pelvic floor therapy is also my next move to see if that may help. I rarely if ever complain or vent to anyone......whew, feels good to get this off of my chest!!

[Nancy178]

Thank you for responding. After reading several comments on here regarding their experiences with Botox, or what they've heard, and now yours, I have decided against it. I have learned to live with what I have. My life may not be what it once use to be, but I have adapted. As long as Depends work and allows me to leave the home and do some things, that's better than nothing.

I'm so sorry to hear this from you because I can only imagine what you are going through. I'm so sorry! Thank you for sharing.

BTW, Interstim has not worked for me, and it is a very painful operation!!!

Please take care.

Nancy

[jleblanc]

Thanks Nancy!

Like I said, I think there are a lot of others who have found success with Botox, I just don't happen to be one of them. I have a cornucopia of meds that I take, and I am kind of getting sick of taking them! Pyridium, Darcalma, Flexeril, Vistaril, Elmiron, Vicodin for pain (which is daily now), Benadryl.....blah blah! I have to say that I function quite well, and don't really talk to many people about the fact that I have IC, since most people don't understand it, and some actually think it is funny. My big problem right now is that I am doing the Breast Cancer 3 Day in November-60 miles-and I am kind of panicked, although there are restrooms every 1-3 miles on the route. Still, it is hard to train without being sure I can find a restroom at least every 30 minutes or so. Maybe I need the Depends too! Seriously, you do what you have to, right???
Take care!!
J

[W@@glie1]

:bow:HI When I tried to explain before that my doctor said that botox was the wrong answer for your bladder, I got dogged pretty bad thru pm's.. because I stated that it was used for cosmetic purposes only and it is only a temperory fix for a problem. It is not long term and not only will it temperorly numb the nerves it can permenatly damage them and cause severe rentention in your bladder. I looked it up in thru the FDA approvals and NO where in here is it approved for IC.

On April 15, 2002, the FDA approved the use of Botox injections to temporarily reduce the appearance of frown lines and wrinkles between the eyebrows. The product has already been widely used for this purpose by dermatologists, plastic surgeons, and other doctors. But this approval formally gives the manufacturer permission to market it as a wrinkle reducer.

Here is more information about the approval.

Brand name: Botox Cosmetic

Generic name: Botulinium Toxin Type A

Maker: Allergan, Inc., of Irvine, Calif.

How it is used: Botox is a toxin produced by the bacterium Clostridium botulinum. When a purified form of the toxin is injected into the muscles, it blocks the production of a chemical called acetylcholine, which normally causes the muscles to contract and cause wrinkles. As a result, the injection temporarily paralyzes or weakens the affected muscles.

Botox is available only by prescription and must only be used under strict medical supervision.

Botox was first approved in 1989 to treat eye muscle disorders and in 2000 to treat a nerve disorder called cervical dystonia,which causes severe neck and shoulder contractions.

Basis of approval: The FDA based its approval for this new use of Botox on several clinical trials involving a total of 405 people with moderate-to-severe frown lines between the eyebrows (known as glabellar lines) who were injected with Botox or a placebo.

After 30 days, the great majority of researchers and patients said the frown lines improved or were nonexistent. Very few people in the placebo group saw similar results.

The appearance of these frown lines was reduced for up to 120 days in the Botox group. It's recommended that the drug be used no more frequently than once every three months and the lowest possible dose should be used.

Concerns: The most common side effects after injection were headache, respiratory infection, flu symptoms, droopy eyelids, and nausea. Less than 3% of patients reported more severe reactions such as pain in the face, redness at the injection site, and muscle weakness. These symptoms were usually temporary, but could last several months.

[W@@glie1]

:bow:
My urologist told me that Botox wasnt recommended,however my obgyn specialist recommended it. I have read some scarry stories of how poeple have lost the ability to control their urine after Botox. No thanks .. I will wait for a safer option.