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    InterStim required before Botox?

    I finally decided to ask my urologist about getting Botox injections for my neurogenic bladder. Although I'm doing better with incontinence after I started self-cathing several months ago, it still affects my QOL since the maximum time I can wait in-between is 3 hours. I have mobility issues, making it even harder to get to the bathroom. I really want to be able to extend that time to 4 hours ... especially at night!

    My urologist told me insurance now only covers Botox injections for incontinence after both oral meds AND neuromodulation therapy fail. So, am I missing something? What I've read says it's an FDA approved therapy if the drugs fail. I haven't read anything about failing neurostimulation treatment as well. I know it was FDA approved 2 years ago for conditions like the neurogenic bladder in MS, but was also FDA approved for OAB this past January.

    I wasn't thrilled when urologist sent me home with yet another anticholinergenic. Besides the fact Detrol LA wasn't effective when I was on it a few years ago, I had significant side effects of constipation and dry mouth. I've had some expensive dental problems as a result. I fully expect the same side effects this time.

    I already have a history of infections that have colonized on other implanted devices three times in the past, requiring multiple surgeries. The worst infection resulted in endocarditis. Needless to say, the idea of yet another implanted device doesn't set very well with me. I hope & pray I never have an infection with my baclofen pump.

    I also went through a heck of a lot just so I could once again get MRIs after years of not being able to have any. I had my pacemaker removed and replaced by a MRI compatible one. After the surgery, I had one of my worst exacerbations and spent months in rehab. One thing kept leading to another and I went on a downhill spiral for more than a year. After several more months of rehab, I still haven't recovered to my pre-surgery status.

    So, the first question out of my mouth was whether or not I could still get MRIs. His answer was yes, but only of the head. Then, said it was probably safe to do more than that, but good luck trying to find a facility that would. Yeah, right ... that means it's a big, fat NO. Not something I'm willing to risk, anyway. It was a hassle getting a MRI of my thoracic spine with the new pacemaker, when it is considered safe by Medtronic when following their protocols.

    Anyways, sorry for my long rant. Thanks for 'listening' if you read this far. I know phone calls are in order to try and get an answer from my insurance company. I'm just not looking forward to the process and a potential uphill battle with my insurance. I know I'm fortunate to have insurance, but it can be frustrating trying to jump through all their hoops for coverage. *sigh*
    Kimba

    “When you change the way you look at things, the things you look at change.” ― Max Planck

    #2
    InterStim for AOB

    Try the InterStim for your AOB. I just did for my UAB. I had no problems getting my insurance to cover the InterStim. No need for follow up injections like with Botox every 6 mos. Just a new generator (from dead battery) every 5-10 years (depending on how you set the InterStim). Note: The InterStim is not for the faint-of-hearters, though. There was a tad bit of pain with the lead and generator implant that I am still getting over. However, it is nice to be able to pee again and the pleasant side effect for much less muscle spasticity in my legs and feet.

    Comment


      #3
      I don't have experience with this (just now researching Botox injections as I may be able to join a study) but I'm so sorry you've been dealing with all this and I hope you're able to get things straightened out with insurance approval.
      2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins!) Dec '09: Started Beta. Oct '13: Started Tecfidera. May '15: Considering Gilenya.

      Comment


        #4
        Thank you for the replies, Junkman & Hope32.

        Much to my surprise, the new medication (Toviaz) has been helping. I'm also not noticing any side effects! I am prescribed 8 mg vs. 4 mg. The others I've tried in the past didn't help much, and after a year or so quit working entirely, even with higher dosing. The other medications always left me with significant dry mouth and constipation. Ongoing dry mouth without a proactive dentist (I'd never even had a cavity before) resulted in some pretty expensive dental work (and a new dentist ).

        So, for now, I'm happy to report I don't need InterStim or Botox. I would still prefer Botox injections over InterStim if the medication stops working, though. I went through a lot to be able to get MRIs again. Having yet another device implanted is nothing I would look forward to, unless it was absolutely necessary. I've just had some very bad luck in the past with infections, especially those involving implanted devices. I will just need a dr. willing to write a letter of appeal to my insurance company if Botox was denied.

        But, glad to hear the InterStim is working so well for you, Junkman! And, good luck, Hope32, getting into the Botox study! I hope you will both keep us posted.

        Best wishes,
        Kimba

        “When you change the way you look at things, the things you look at change.” ― Max Planck

        Comment


          #5
          The whole OAB is annoying, meds included!

          Like many MSers, I've dealt sith OAB, leakage, etc. Can be very inconvenient, embarrassing, humbling, annoying, Have taken Detrol, Oxybutnin, Detrol La, all with the lovely side effects of dry eyes (contact wearer), dry mouth, dried out skin. Put up with it but hoped for a better option. Yay!!! I just bought a pack of the new Oxytrol patches that are OTC and am pleasantly surprised with the results. The first one took awhile to kick in which resulted in a rather horrifying episode of incontenance while out w/a friend, despite :confused wearing a pad... Anyway, so far so good. Trying to control fluid intake, esp. Coffee without falling asleep all day; but at least I'm dry!

          I do have moments when I wonder if/when the this will change, but really grateful it hasn't yet...

          Comment


            #6
            Question about the Patches

            I'm presently taking the generic petrol, long acting. Can I try the patch while I'm taking this, or is it one or the other? I want to stop taking any drug for incontenance if I can, but I'm not sure if the patch will work or not, so......I run the risk of having more accidents. Ant thoughts?

            Comment


              #7
              Thank Goodness for Botox

              I have an appointment with my neurologist every nine months for botox injections. I drive myself to and from the appointment. Or go with a friend and go out for lunch and shopping afterwards.

              My life is so much easier since I started having the injections. I am so grateful to have this option for incontinence.

              Comment


                #8
                Interesting that this old thread was revived again, especially because I recently had the Botox procedure done. Toviaz worked a bit better than other medications I've tried, but still began to loose that effectiveness. I'm beginning to notice I can hold it longer, despite the urge. I hope my results will be as good as so many others have had.

                Detrusor Overactivity associated with a Neurologic Condition (aka NDO):

                Botox is indicated for the treatment of urinary incontinence due to detrusor overactivity associated with a neurologic condition (e.g., SCI, MS) in adults who have an inadequate response to or are intolerant of an anticholinergic medication. http://www.drugs.com/pro/botox.html

                My insurance does cover Botox for my condition, and it's covered after only failing 1 anticholinergic medication.. (Now I've failed 3). The use of Botox for a different condition, overactive bladder (OAB), requires the patient fails 3 oral meds. My insurance does NOT require a patient to fail InterStim before Botox, for either condition.

                So, I'm also not sure why he later told me he had confused his information with the other condition. Especially since treating neurogenic bladders is supposedly one of his areas of expertise. But, I digress and won't speculate on his rationale any further here.

                But, this has again brought home how important it is to be your own advocate, and knowledge empowers us. That's why I so appreciate those who've shared their knowledge and experience with the rest of us on MSWorld.

                I was quite frustrated when I wrote the first post. Not only because of what I read about others' experiences, but also because of my history of serious infections with implanted devices (which should've been an excellent basis for an appeal, if it was needed). At first, I thought maybe I missed something somewhere re: when Botox is approved therapy for my condition.

                Of course, I've since had a scare that something was wrong with one of my kidneys. After further testing, my kidney was shown to be functioning fine, thank God. It's been upgraded to "watch it for a year" status. It's also been a rough several months, which is why I didn't pursue this further, sooner. Having this symptom under better control would have made life so much easier.

                Anyways, it was probably a good idea to update this thread. Please check with your insurance if you ever have questions about what is covered and when, about anything. Allergen does offer an assistance program for Botox, but that would only cover the cost of the medication. (There are other costs involved that would need to be taken into consideration.)

                Here's more information about Botox:

                http://www.allergan.com/treatments/u...continence.htm

                http://www.researchgate.net/publicat...r_overactivity
                Kimba

                “When you change the way you look at things, the things you look at change.” ― Max Planck

                Comment


                  #9
                  Hey Kimba,

                  Just think, if you had gotten an Interstim you would be on your way to being a bionic woman... poster child for Medtronics...Pacemaker, Interstim, and Baclofen pump (I'm assuming your pacemaker is Medtronic, but you may have another brand.)

                  Sorry, I hadn't read this thread before and when I read they might have you try the Interstim, I couldn't believe it. I mean technology is good, but if you had 3 Medtronic devices at once, I bet you'd win an award or something

                  Comment


                    #10
                    Hi rdmc,

                    Too funny. I've already felt that way (I've also had 2 implanted mediports ). Too bad they didn't give me her powers!

                    Medtronic had the first FDA approved MRI compatible pacemaker, and now they have two. Biotronik (gotta love the name ) has one that was FDA approved earlier this year.

                    Originally posted by rdmc
                    I bet you'd win an award or something
                    Or at least a discount!!! (Really wouldn't want another device implanted in the other side of my abdomen, though, that's where the pulse generator goes.)

                    But, something else I've learned is because it's not necessarily effective for MS, it is often not covered by insurance.

                    "Safety and effectiveness have not been established for pregnancy and delivery; patients under the age of 16; or for patients with neurological diseases such as multiple sclerosis." http://www.medtronic.com/patients/ur...y-information/
                    Kimba

                    “When you change the way you look at things, the things you look at change.” ― Max Planck

                    Comment


                      #11
                      Hm, that bit about "safety or effectiveness" in MS has me wondering. A possible adverse effect is radiating leg pain, sometimes persisting even when the implant is deactivated or removed. I wonder if it might not only be potentially less effective in ms, but also trigger or worsen existing ms-caused leg pain.

                      One of my "possible ms" symptoms is left leg pain/weakness. One of my InterStim objections is that I don't need to exacerbate my existing hip/leg pain.

                      Comment


                        #12
                        My urologist told me that when/if botox stops working for me, the interstim will be my next option. That kind of scares me right now. I've been getting botox for 6 years & it works fabulous, but it seems to last for a shorter amount of time now.
                        MS dx's 2000
                        Tysabrian

                        ¤ fate is not just who's cooking smells good, but which way the wind blows ¤

                        Comment


                          #13
                          Hi allHailye2,

                          Bummer. So sorry to hear it's not working as long for you anymore, it really is a wonderful thing! But, I hope it still continues to work well enough for you. How long does it work for you now compared with how long it used to work? I was told after a few treatments, the effects might actually last longer.

                          Soon I'll be coming up on the 3 month mark. After that, it can be done again. I just hope it lasts longer than that for me. Not sure about this (or if I even would want him to now), but my urologist said he could give me a higher dose than what's recommended the next time (300 units vs. 200 units), depending on my results. I got a UTI from the last procedure that knocked me down w/ my MS for awhile, so sure don't need another one. Now I read antibiotics should be given prophylactically?

                          The Interstim isn't even covered under my insurance, because it's considered experimental for MS. But, if it's an option (if it came down to that) and it worked for you, maybe it would be worth it? The only other option I've been offered is a supra pubic catheter. I'm just not ready for that.

                          For now, we are fighting with our insurance company. Even though Botox for a neurogenic bladder is covered (and we were given pre-authorization before the procedure), now they don't want to pay for the cystoscopy portion of it. Funny (well, not ), since it's part of the procedure! Even the FDA approval announcement includes that information. Kinda like paying for a surgery and not paying for the sutures to close you up! Always something ... just hope it's all straightened out before the next time.

                          I found this, and had no idea you could develop antibodies to Botox:

                          6.2 Immunogenicity

                          As with all therapeutic proteins,there is a potential for immunogenicity. Formation of neutralizing antibodies to botulinum toxin type A may reduce the effectiveness of BOTOX treatment by inactivating the biological activity of the toxin.

                          The critical factors for neutralizing antibody formation have not been well characterized. The results from some studies suggest that BOTOX injections at more frequent intervals or at higher doses may lead to greater incidence of antibody formation. The potential for antibody formation may be minimized by injecting with the lowest effective dose given at the longest feasible intervals between injections.
                          http://www.botoxforincontinence.com/...a_Overview.pdf

                          I wonder if that's why it's becoming less effective for you? There's a blood test called ELISA that tests for neutralizing antibodies. It is kind of expensive (it was over $1000 when I had it done several years ago, while I was on one of the interferons), so not sure something like that would even be covered by insurance for Botox.

                          Good luck. Keep us posted, OK?
                          Kimba

                          “When you change the way you look at things, the things you look at change.” ― Max Planck

                          Comment


                            #14
                            Kimba22 it used to last around 8-9 months, now it's about 4-5 months. I know the soonest you're able to get it again is 12 weeks later. It worries me that I'm getting closer to that timeline.

                            I was in the study that got this approved for neurogenic bladder. I was randomly chosen to receive 300IU instead of the 200. Near the end of the study, 200IU was decided as the recommended dose (as they didn't see much of a difference between the two doses). So one of my doses was 200IU. After that I was out of the study & back up to 300. I think it lasts longer, but maybe my bladder is just THAT bad.

                            I take antibiotics for 7 days, starting 3 days before the procedure. I've only had a couple UTI's during my years on botox.

                            If the Interstim is my next option after this, I will do it. I won't like it of course lol but I'll do it. My bladder is what's been hit the hardest by my MS & it sucks!! But it's a QOL thing. I'd be sooo miserable without anything. I cringe when I look back on my pre botox days.

                            PS...I'm 2 months out from my last botox procedure.
                            MS dx's 2000
                            Tysabrian

                            ¤ fate is not just who's cooking smells good, but which way the wind blows ¤

                            Comment


                              #15
                              here we go again...

                              Kimba22 so i am now 3.5 months out from my last botox procedure. i've started having accidents again. i'm going to get the myrbetriq rx the uro gave me filled. we had decided to do that once i start having accidents again...to try to reduce the accidents until my next procedure & perhaps lengthen the time between procedures.

                              i took myrbetriq before i had my last procedure done & it seemed to help some. but ugh, i'm so annoyed & depressed & i don't know what other feelings. i hate this!

                              how are you fairing now?
                              MS dx's 2000
                              Tysabrian

                              ¤ fate is not just who's cooking smells good, but which way the wind blows ¤

                              Comment

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