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  • Long term Botox update

    I had my fourth set of Botox injections the day before yesterday, and I thought it would be a good time to check in. I haven't been around here much lately - my job and my life are crazy busy, and my IC has been overall well behaved.

    I've generally been getting five months between Botox injections, although this time because of scheduling limitations I only went four months. In between Botox injections, I've been keeping up with meds (primarily Elmiron) and daily instillations (Marcaine, heparin, gentamicin, and sodium bicarbonate). And with all that, I've mostly been feeling great. The last few weeks of a five-month period can bring some increased pain, and urgency is still an on-again, off-again problem, but compared with where I had been, it's all very good. I do have to cath regularly because of retention issues brought on by the Botox, but that's become so routine (and so pain-free) that I hardly think about it anymore. Apart from the instillations and catheters, most days I could just about forget that I have IC.

    So, while my bladder has been happy, my liver has been continuing to give me conniptions. I was supposed to have a cholangioscopy for my PSC back in August, but all they ended up doing was an ERCP (sheesh, all these acronyms!) and they weren't able to dilate my strictured right hepatic duct. I've fought with extreme fatigue and itching, and recently it's gotten much worse. I called my gastroenterologist earlier this week when I couldn't deal with the itching any longer, and he added naltrexone to the Rifampin and cholestyramine I already take. I just started it, so it's too early to tell if it's going to help.

    On top of that, my normal low-level depression has blossomed (yet again) into full-blown clinical depression. I've been seeing a psychologist since August, but I'm a little underwhelmed by him - I last saw him nearly a month ago, at which time he promised to call me back to make a follow-up appointment for the following week, and to refer me to another doctor for further evaluation. After a week and a half of not hearing from him, I called his office and they sent in the referral, but still no call back and no follow-up appointment. Yeah, THAT helps my depression.

    On the good side of things, work has been mostly steady, and often pretty busy with lots of fun projects. My kids are a continual source of joy. And to top it off, a friend of mine is going to nursing school, and lent me his hot air balloon for the next couple or three years, so I've got a good excuse to go out and fly a little more often than I had been in my own old, leaky balloon. There have to be a very limited number of friends in this world who, when someone says, "Can I borrow your hot air balloon," they say, "Sure!" I count myself fortunate that I have three of these friends, and one who's willing to make it a long-term loan.

    Dave

  • #2
    Re: Long term Botox update

    Glad to hear that the botox is still working. Have you ever been able to give up the instillations all together while you have the botox? Sorry to hear about your liver trouble. Having itchy skin all the time doesn't sound like fun at all. I bet there are many wonderful hot air balloon rides in the future though by the sounds of it. Glad to touch base again. I hope your health improves on the new medication. Many blessings!

    Current Meds:
    1 Elmiron 100mg 3x a day
    1 Cimetidine 300mg 2x a day
    4 Gabapentin 300mg 3x a day (3600mg)
    1 - 2 Atarax 25mg at bedtime
    1 baclofen 10mg 3x a day as needed
    200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
    2 belladonna and opium suppositories as needed for pain daily.
    Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

    I have tried but failed -
    lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
    [/I]

    Comment


    • #3
      Re: Long term Botox update

      After my first and second Botox injections I stopped the instills completely for a while, and picked them back up as the Botox started wearing off. The third time I had Botox, I decided to keep up the instills - I'm already cathing anyway, so it's very easy to do an instill in the morning before I leave the house. I've found that they really level out the you'd and down of my bladder, even with the Botox. If I start every day with an instill, every day is a good one for my bladder. That's hard to beat.

      I've only been on the new med for two days, but I've slept better the past two nights than I've slept in years. Hopefully that keeps up - it's a nice side effect!

      I'm going out tomorrow to crew for a friend who's ballooning in the morning. If the weather is nice, there will be 75-100 balloons up in the morning. Reminds me why I like Albuquerque so much.

      Comment


      • #4
        Re: Long term Botox update

        I am considering keeping up the instillations for a while as it really seems to help with my pain. However, the instillations cost 320 per month and I was really hoping to put that money on my loan.

        Current Meds:
        1 Elmiron 100mg 3x a day
        1 Cimetidine 300mg 2x a day
        4 Gabapentin 300mg 3x a day (3600mg)
        1 - 2 Atarax 25mg at bedtime
        1 baclofen 10mg 3x a day as needed
        200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
        2 belladonna and opium suppositories as needed for pain daily.
        Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

        I have tried but failed -
        lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
        [/I]

        Comment


        • #5
          Re: Long term Botox update

          What are the ingredients in your instills? Mine aren't that much, and ironically the most expensive part is the sodium bicarbonate, which is just baking soda in sterile water. The marcaine, gentamicin, and heparin aren't all that costly. Do you do your own instills, or is it a doctor visit each time you need one?

          Having to choose between meds and bills sucks.

          Comment


          • #6
            Re: Long term Botox update

            Mine treatments are 8cc of lidocaine, 4cc of sodium bicarbonate, and 2cc of heparin. The heparin costs the most 170 for 25ml. I do instillations 4 times a week at home.

            Current Meds:
            1 Elmiron 100mg 3x a day
            1 Cimetidine 300mg 2x a day
            4 Gabapentin 300mg 3x a day (3600mg)
            1 - 2 Atarax 25mg at bedtime
            1 baclofen 10mg 3x a day as needed
            200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
            2 belladonna and opium suppositories as needed for pain daily.
            Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

            I have tried but failed -
            lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
            [/I]

            Comment


            • #7
              Re: Long term Botox update

              Wizbe

              Just wondering are your instill's, meds and caths etc covered by our medical plan?
              My are with you all. May you all find a way to peace and joy in your lives.

              Comment


              • #8
                Re: Long term Botox update

                Hi Mothergoose! No, BC Pharmacare does not cover my instillations. The last time I checked they told me that the medications could be bought over the counter and therefore it would not be covered. Can heparin be bought over the counter? I also pay for my catheters. I should look into this all again. I did some more pricing and found some inexpensive gentle catheters which I am going to order from a medical supply store down here. At my specialist appointment now. I am in the waiting room :-)

                Current Meds:
                1 Elmiron 100mg 3x a day
                1 Cimetidine 300mg 2x a day
                4 Gabapentin 300mg 3x a day (3600mg)
                1 - 2 Atarax 25mg at bedtime
                1 baclofen 10mg 3x a day as needed
                200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
                2 belladonna and opium suppositories as needed for pain daily.
                Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

                I have tried but failed -
                lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
                [/I]

                Comment


                • #9
                  Re: Long term Botox update

                  Originally posted by wizbe View Post
                  Hi Mothergoose! No, BC Pharmacare does not cover my instillations. The last time I checked they told me that the medications could be bought over the counter and therefore it would not be covered. Can heparin be bought over the counter? I also pay for my catheters. I should look into this all again. I did some more pricing and found some inexpensive gentle catheters which I am going to order from a medical supply store down here. At my specialist appointment now. I am in the waiting room :-)
                  If you have pharmacy coverage, they should cover at least the heparin, which does require a prescription --- and I know of some ICers who have coverage for their catheters. When I did home instills I didn't have pharmacy coverage so I had to pay --- but when I had instillations in the uro's office, they were covered. You would think they would want to go the cheaper route and cover home treatment, but insurance companies can be strange.


                  Donna
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                  Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                  [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment


                  • #10
                    Re: Long term Botox update

                    Donna and Wizbe

                    Donna the rules for this stuff are very different in Canada.

                    You should check the caths mine are covered, I called about 6 months ago asking about them cutting out paying for blood sugar test strips. I was told they were no longer covering theses, so I asked about the caths and they said they would still be covered.

                    The list of stuff the has become OTC grows all the time.

                    I get B12 RXed for injections, you can buy this OTC after you have had it written as a script at least once. IF you have a script it is covered if not you pay, they will not pay for the needles to inject it with.

                    It makes no sense where I live for a B 12 shot it costs $150.00 to our health insurance if I go get the shot at the clinic. If I give it to my self the B 12 is covered, but the sryinge and needle to get her visit about a dollar, they won't pay for that.

                    When I checked into Urastat (sp), they would not cover any of it, the medication or caths to administer it.

                    So yes it is available in Canada but I sure don't have the $500- $800 per month to pay for it. I am not too sure if the price it has been quite a while since I checked into this.
                    My are with you all. May you all find a way to peace and joy in your lives.

                    Comment


                    • #11
                      Re: Long term Botox update

                      Wow. I hadn't known just how different the rules are in Canada. That's a big expense to have to beat on your own.

                      All my catheters and instill meds are covered at 100%. The only thing that they won't cover is the syringes and needles, but I've got it down to needing just one catheter-tipped syringe with Luer slip adapter and one needle to mix the whole cocktail, so my out of pocket is around a dollar a day.

                      I'm very fortunate that my wife works for a hospital. If we didn't have insurance through her job, I'd have to change jobs because my employer offers no benefits of any kind.

                      Actually, that's not true - just no official benefits. I have a series of appointments that started today, general anesthesia three days a week for at least a month, then one day a week for at least another month. My boss drove me to my appointment and had a coworker pick me up afterwards, since I can't drive at all on my procedure days, and he's offered to do that for the whole two months worth of treatment. That's the way he runs his company and takes care of his employees, but it's a tiny firm that can't afford things like paid vacation, sick leave, and health insurance.

                      Comment


                      • #12
                        Re: Long term Botox update

                        Originally posted by ltapilot View Post
                        Wow. I hadn't known just how different the rules are in Canada. That's a big expense to have to beat on your own.

                        All my catheters and instill meds are covered at 100%. The only thing that they won't cover is the syringes and needles, but I've got it down to needing just one catheter-tipped syringe with Luer slip adapter and one needle to mix the whole cocktail, so my out of pocket is around a dollar a day.

                        I'm very fortunate that my wife works for a hospital. If we didn't have insurance through her job, I'd have to change jobs because my employer offers no benefits of any kind.

                        Actually, that's not true - just no official benefits. I have a series of appointments that started today, general anesthesia three days a week for at least a month, then one day a week for at least another month. My boss drove me to my appointment and had a coworker pick me up afterwards, since I can't drive at all on my procedure days, and he's offered to do that for the whole two months worth of treatment. That's the way he runs his company and takes care of his employees, but it's a tiny firm that can't afford things like paid vacation, sick leave, and health insurance.
                        You are very fortunate. My hat is off to your employer!


                        Donna
                        Stay safe


                        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                        Have you checked the ICN Shop?
                        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                        Patient Help: http://www.ic-network.com/patientlinks.html

                        Sub-types https://www.ic-network.com/five-pote...markably-well/

                        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                        [3MG]

                        Anyone who says something is foolproof hasn't met a determined fool

                        Comment


                        • #13
                          Re: Long term Botox update

                          Hi there
                          May I ask how much botox in the bladder I should ask for when its for pain? 50,100 or 200 units? Im really scared of having to self cath...is it hard?
                          Have had IC for 3 year (only pain) and nothing has helped yet..
                          Thanks.
                          X
                          Maria
                          I have had IC since January 2015 and mainly with pain / burning / warm feeling in bladder / discomfort.

                          Currently: Elmiron 4x100mg, LDN 4 mg at night, antihistamines

                          Tried and didnt work:
                          Meds; Uracyst, DMSO, Gabapentin, Cyclosporine A, Amitriptyline, hyperbaric oxygen chamber 40 x sessions, high dose long term antibiotics (8 months)

                          Naturals; Colostrum, DH Aloe vera, acupuncture, MSM, Glocosamine, Homoepathic treatment, marshmellow root, chinese herbs, IALURIL, Gotu Kola, D Mannose.

                          --

                          Please find a cure - so many are suffering

                          Comment


                          • #14
                            Re: Long term Botox update

                            Originally posted by Mariamagnolia View Post
                            Hi there
                            May I ask how much botox in the bladder I should ask for when its for pain? 50,100 or 200 units? Im really scared of having to self cath...is it hard?
                            Have had IC for 3 year (only pain) and nothing has helped yet..
                            Thanks.
                            X
                            Maria
                            I have never tried botox, but I learned self catheterization years ago. The first few times were a little touchy, but no problem after that. If you have concerns, I suggest you ask your doctor about learning how should you need to know --- much easier than having the trauma and expense of an emergency room visit. I think knowing how is a good idea for any individual with IC even if it's never needed.

                            Hugs,
                            Donna
                            Stay safe


                            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                            Have you checked the ICN Shop?
                            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                            Patient Help: http://www.ic-network.com/patientlinks.html

                            Sub-types https://www.ic-network.com/five-pote...markably-well/

                            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                            [3MG]

                            Anyone who says something is foolproof hasn't met a determined fool

                            Comment


                            • #15
                              Re: Long term Botox update

                              Originally posted by Mariamagnolia View Post
                              Hi there
                              May I ask how much botox in the bladder I should ask for when its for pain? 50,100 or 200 units? Im really scared of having to self cath...is it hard?
                              Have had IC for 3 year (only pain) and nothing has helped yet..
                              Thanks.
                              X
                              Maria
                              It's very, very easy. Like Donna said, the first few times may be a little tricky, but I've been cathing multiple times a day for a couple of years now and I hardly think about it.

                              I'm told that the hardest part for women is getting the catheter into the urethral opening (I'm male, so that part's no challenge at all). Catheter manufacturers make various mirrors that are specifically designed to help you see what you're doing to make it easier, and your doctor should be able to help you figure out what works well for you.

                              It is somewhat uncomfortable at first, just because the urethra is rather sensitive. That goes away quickly, especially if you use slender catheters - ask your doctor for the smallest size available (often 8 French). I'm assuming from your screen name that you're female, so be sure to ask for female-length catheters, which are shorter and much easier to handle because they're not as long and floppy as male-length catheters.

                              Also, be sure to ask for hydrophilic catheters, which you hydrate with water or saline (usually from a pouch contained in the catheter package) and are fully lubricated. They're much easier and more convenient than using a tube of lubricating jelly. Some of them even have the water already on the catheter, so you just take it out of the package and use it.

                              I started out with red rubber catheters and lidocaine jelly, which was messy (although not hard) to insert. The lidocaine helped with numbing, but I ended up not needing it once I switched to hydrophilic. That said, if it' uncomfortable at first, you can ask for lidocaine to numb your urethra. Your doctor can prescribe it in a Urojet dispenser, which is specifically designed to squirt the jelly into the urethra. It burns slightly as it goes in, but if you give it a few minute it does a good job of numbing your urethra.

                              Feel free to ask any questions you have. There are many people here who have learned to self-cath, so you'll find lots of tribal knowledge to address any of your concerns.

                              Comment

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