How many instills without results?

[tehuti88]

I'm sorry to ask the same question I ask every time I come here , but I really need to know whether I should continue with my current treatment or seek something else. I can be patient and just keep at it if there's still a chance it could be working, but I need to know (because the urologist keeps asking me what next) what's a reasonable amount of time to continue with this, without signs of improvement, before moving on to something else. I can't afford to keep with instills for, say, seven years if I should be able to tell after two years that it's not going to work.


I realize my posts are long so here's the short version first:


*Failed hydrodistension with discovery of Hunner's ulcers; about 14 months on oral Elmiron, dosage upped to 500mg so far; plus 25mg hydroxyzine (generic Atarax); almost-weekly bladder instills since last May; maximum bladder capacity around 7-9oz (on a REALLY GOOD day, usually just after instills--closer to 5-7oz otherwise), bladder irritation bad enough to urinate around 2-3oz. Only treatment options available in my area are oral Elmiron and Atarax, Elmiron instills, and hydrodistension, none of which have worked so far. Is there hope for me yet with this course of treatment, or is it time for surgery?


And now the detailed version:


*I had a cystoscopy (Hunner's ulcer discovered) and attempted hydrodistension about a year ago (April '10, I believe); no improvement.


*I've been on oral Elmiron for over a year (December '09), and have gradually upped the dosage to 500mg; I plan to ask for it to go to 600mg the next time I speak with the urologist, but I'm guessing that's as high as I'll be able to go, I'm lucky Medicaid covers it so far and I haven't heard from anyone here going any higher. (No negative side effects so far, at least.) Am also currently on 25mg hydroxyzine a day.


*I've been getting bladder instills (Elmiron, sodium bicarbonate, distilled water, Lidocaine) almost weekly since May '10 (started out once every two weeks, then moved to once weekly except when they have holidays). I'm up to holding the urine in for about five hours (with extreme discomfort) in hopes of the medicine having a longer amount of time to soak in. The urologist's office is open only two days a week, and the only transportation I have is my (fulltime working) parents, so once a week is about as much as they can do for me regarding instills.


*On two occasions, I managed to get up to about 9oz in my bladder, the most I've ever held, but both of those occasions were after the instills (the Lidocaine might have helped things). BTW, I have little to no burning after instills, no terrible discomfort or pain or anything, though I would far rather have the pain than the urgency/frequency.


*I thought I'd noticed a very, very slight improvement in overall sensitivity, of about a half ounce; i. e., what used to feel like 1.5oz now feels like 1oz. I'm not so sure about this though as sensitivity seems to vary with no pattern I can detect. (I feel as if my bladder shrinks and then grows at different times--sometimes a particular amount of urine is just mildly annoying, sometimes that same amount is unbelievably bothersome. Is that in fact possible?)


*At this point in time, about 2oz is annoying enough for me to want to use the bathroom; I've frequently managed to hold up to about 4oz or so when necessary (i. e., when distracted doing other things), but for the most part don't do this as most of my days are spent sitting at home dozing and reading, and I can't concentrate on either if I feel like I have to urinate.


Yesterday I attempted the 32oz test they make you do before a bladder ultrasound. In the past, all I had to do was drink 32oz and wait a mere 20-30 minutes (not the hour they say you should be able to wait) before my bladder would be so full I couldn't stand it. I remember in the past when I did this, I would manage to get about 6oz. This time, it took over two hours for the water to go through me (maybe because I've been severely limiting my fluid intake for over a year now?); when it became almost too excruciating, I went, and was dismayed to find it was a mere 7.5oz. Seeing as I often manage 7oz without nearly so much agony after my instills, this really discourages me; even the two occasions when I held in 9oz didn't feel as bad as this 7.5oz did. Which is why I can't help but feel only the Lidocaine is helping me out, and I haven't really improved much at all.


I was so encouraged those two times I got 9oz, I was really hoping maybe my case is just more difficult than usual and I would slowly improve. But I really don't know anymore. Whenever I've asked here in the past I've been told it takes over a year on oral Elmiron, and some people noticed improvement after the dosage was upped to 400-600mg, but I've done both of those and results are negligible. I feel the urologist is getting impatient, asking me every three months what plan of action I'd like to take now and me always saying just keep this up; the nurse always asks if I notice improvement yet, and I feel so discouraged to keep saying no.


When I've posted here in the past I was sent a private message about one patient's regimen involving home instills three times daily for several months, then twice daily for several months, then once daily for several months, totaling a year, after which she noticed vast improvement. That's a massive number of instills. Seeing as I can get mine only once weekly, I imagine it would take me WAY over a year, probably at least seven years or so! I have no clue if the urologist would even treat me that long, when I started this out he said he didn't intend it to be a long-term treatment; already I've been in treatment over a year. If I knew that maybe mine is just a difficult case and I'll need as many instills as that patient but then will surely feel improvement, I could keep plugging away, but with no real improvement so far, I can't help but feel I'm wasting everyone's time.


The nurse has told me she would teach me how to do the instills myself if it came to that, but last I heard the urologist said it hadn't come to that point yet, and I'm not sure if Medicaid would cover not only the extra Elmiron needed but all the other stuff like the catheters, Lidocaine, sodium bicarbonate, distilled water, gloves, betadine (sic?--sorry, not in my dictionary), cottonballs, syringes, mixing cups, whatever all else is needed. I'm also not sure I'd be physically capable of catheterizing myself since I'm overweight.


The only other option available is bladder augmentation surgery, which would entail a trip way downstate (they don't do it up here) and a hospital stay of at least two weeks, and no guarantee of it working, with the likelihood that I would need to catheterize myself intermittently the rest of my life. None of the other alternative therapies are available around here; my urologist hasn't even discussed them with me, so when they're suggested to me here I don't understand them much. The next-nearest urologist's office, an hour away, offers the exact same options, and has never even heard of bladder ulcers. Oral meds, med instills, hydrodistension--that's all.


(I notice no improvement or worsening or difference at all in my symptoms based on what I eat or drink. The only difference is with how MUCH I drink; I limit myself to around a lousy 30oz a day, so am often thirsty, and always dead tired. I'm experiencing no pain. My bladder is just permanently small and I need it to get bigger.)


I know everyone's case is different, but I really feel I need to know how long I should continue with this course of treatment before deciding it's been unsuccessful. I have no idea if my case is typical and I will notice improvement or if I'm just delaying the inevitable.


Thank you anyone who replies for your patience, I realize my constant repetition of this question must be annoying. I really thought after that 9oz I was getting a TINY bit better, but this 7.5oz discourages me.


Reading other people's experiences here makes me alternate between being somewhat encouraged and terribly discouraged.

[Linda May]

Do not get discouraged ask your uro this if this was you, instead of me, what kind of treatment would you do for yourself? You may have to find another uro. I hope and pray you find relief soon and they find a cure for this desease.keep us up to date because I learn so much on this forum we all do.

[tehuti88]

Well, my urologist has already stated that he believes bladder augmentation surgery is the only thing that will help me which seems rather extreme to me...but he's the urologist, not me. I can be patient if I know something will be effective, but I would hate to be sitting here with false hopes for something that's not going to work. Every time I tell him to just continue with this treatment I can't help but feel it's pointless.

[jvr]

Hi,

Oh my, I wouldn't even think of having your bladder removed yet! Have you tried Elavil or Lyrica or DMSO instills to name a few other options? Your doctor will only do Elmiron instills? What about heparin or marcaine along with sodium bicarbonate, and lidocaine? I know Dr. Parsons often recommends doing his cocktail of heparin, sodium bicarbonate, and lidocaine 3x's weekly until relief is obtained. Severe patients can do home instills once to several times daily. Honestly, I don't know as much about Hunners Uclers, but I know there are things they can specifically do for those these days. I'm sure others more knowledgeable can chime in here. Is there any way you can get yourself to another doctor who better understands IC treatments? These doctors sound a bit limited to me. It seems unethical for a doctor to remove someone's bladder without exhausting EVERY IC treatment....

Jill

[sailawaygrl]

I had a Dr that was treating my IC and when he got to the end of his "bag of tricks" I found another, much more knowledgable Dr. Later I read my records from the first Dr's office and he had said I was probably a candidate for removal. No I am not!! I have a long way to go before that will even be thought about. Sometimes when they don't know what else to do, it seems they suggest removal. I wasn't ready for that, and I don't think you are either. Do you have any of the IC books? Jill just made a new video on that topic. The Interstitial Survival Guide will give you a lot of treatment options. I would suggest you get the book and a new Dr. You might have to drive a bit to find one, many of us do. It is well worth the trouble of the car ride to see a good IC Dr.

Sandra

[tehuti88]

Oh no! Not bladder removal. I'm sorry I gave that impression. He's suggested bladder augmentation. I don't seem to have "flares" like other people mention, no good days or bad days, I just have a permanently small bladder that seems incapable of stretching (hence why the hydrodistension didn't work, I guess). For me a "good" day is just a day when I have low fluid output and a bad day is when I have high fluid output. The bladder holds the same tiny amount either way.


In terms of treatment the only things he seems to offer--at least, the only things he's ever mentioned--are what I've already tried (oral Elmiron/Atarax, hydrodistension, and instills); he did make mention of an older drug used in instills, but I can't remember the name, and he brushed over that one very quickly, saying it's often painful and so Elmiron is what more patients go with. (To be honest, I would not mind pain if it actually helped my bladder get bigger! I would gladly put up with painful burning urination if it just meant I could get rid of the urgency/frequency! I handle pain much better than this discomfort.)


Does anyone know if the other meds mentioned here would be covered by Medicaid? That's probably the only reason why I can even use Elmiron, since it's so expensive otherwise; I don't work (disabled and on SSI). I would even be willing to learn to do the instills myself at home, if the supplies needed would be covered. I've lucked out so far; the urologist warned me they might not cover my higher dosages since 300 is the recommended one, but so far they have. *crosses fingers*


I remember after my hydrodistension, my mother had been told I should not take aspirin since it could affect the ulcer. I know heparin is a blood thinner like aspirin so is that something that would help or hurt my condition?


My psychologist (sometimes the only reason I'm getting through this so far) called the next moderately sized hospital over (an hour's drive from here, the most logical next choice) to see what their urology department offers; they said the same things--Elmiron, hydrodistension, instills. What I found even more disheartening was that when she mentioned the Hunner's ulcers to them, they expressed puzzlement, having never even heard of "bladder ulcers"! Somehow I doubt they would be much more useful.


Oh yes, I mentioned this to my urologist too...how I'd read at Wikipedia that they sometimes remove the ulcers by burning them out. He quickly shot that idea down, saying it would likely just make the problem worse and not better. (I don't even know if the ulcer is causing me problems--I have no pain, I'm unsure if the ulcers make the bladder unable to stretch? Wikipedia said some people just live with them with the use of "pain management," so that made me think the ulcer isn't the issue.) When my mother (since I have such trouble speaking up) mentioned home instills, he said it "hasn't come to that point yet," but to be honest, when WILL it come to that point? It seems more reasonable to try home instills before getting surgery. But I wouldn't want to waste my time on it if it won't help. I feel so stupid telling him every three months to just keep doing the same thing; I can tell from his demeanor that he doesn't think it's helping. (Of course it's actually his nurse who does the instills, not him--the nurse is much more communicative, but just as in the dark, as I'm the first person she ever did this kind of instill on. The first several times she had to read from an instruction sheet to do it. And look up Elmiron in a medications book to see what its uses were, since she'd never heard of it.)


Everyone around here (northern Michigan, not this board!) seems just completely ignorant about this subject. I think the NEXT hospital to consider since the one an hour away seems no better would be about 2.5hrs away; they're much bigger, but I have no clue how to find out about them (I have terrible social anxiety, even reading responses on this board fills me with dread), and my parents are not too supportive. (I rely on them for transportation too.) It took forever for me just to convince my mother this wasn't all in my head! Even after seeing the ulcer, she seems to think this isn't something terribly serious or bothersome, but I'd gladly exchange it for her wrist arthritis.


Sorry this reply was all over the place. There were some actual questions up in there somewhere.

[L. Thomas]

Dr. Dell says the effect of the instills (lidoacine/heparin) is within the first 20-30 mins. If you are holding the instills 20-30 mins that is fine but under no means hold it if you are having pain. He says it doesn't matter how long you hold the instill, but to try to hold it 10 mins.

[tehuti88]

Dr. Dell says the effect of the instills (lidoacine/heparin) is within the first 20-30 mins. If you are holding the instills 20-30 mins that is fine but under no means hold it if you are having pain. He says it doesn't matter how long you hold the instill, but to try to hold it 10 mins.

I'm having no pain, merely great discomfort since my bladder is so small. (I would deal better with pain.) The first instill I had, the nurse and doctor told me to try to hold it at least a half hour; I held it an hour thinking that would do better, and since then have tried to hold it as long as possible (maximum is about 5hrs). The doctor said at one point that if I kept holding it in for only an ounce or so (the amount of urine it takes before I feel like going to the bathroom) then the medicine will never work. Both he and the nurse seem to think that the longer I hold it in the better. It's also an issue of seeing how much urine I can hold in, which after 5hrs varies between 5-9oz, so holding in the medicine as long as possible isn't the only reason why.

However, I'm not doing heparin instills--mine are Lidocaine/Elmiron--so I don't know if the same thing applies as with heparin. All I know is what the doctor and nurse have been telling me, which is the longer I hold it in the better, though I haven't noticed anything significant yet.

[vanilla]

Hi

I was also having the weekly instills of Elmiron, Lidocaine, & Sodium Bicarbonate. After 11 instillations, I really didn't feel any better until my doctor decided to add dexamethasone, an anti-inflammatory steroid.

[tehuti88]

Back from yet another instill and holding it in two hours later...

I was also having the weekly instills of Elmiron, Lidocaine, & Sodium Bicarbonate. After 11 instillations, I really didn't feel any better until my doctor decided to add dexamethasone, an anti-inflammatory steroid.

Thank you for the response. Might I ask what sort of improvement you noticed after this was added to the instill, and what if any side effects there might be? (I hear the word "steroid" and get nervous.) Can it still be used if there are ulcers present?


It's likely not available as my urologist hasn't brought it up, but if it is, and offers any benefit...I would be glad to have my bladder be a giant flaming ball of fire once a week if it meant it would be normal the rest of the time!

[vanilla]

Hi again,

The instillations had helped with the pain, but I still had the annoying need to pee all the time. That's when the doctor decided to change the recipe and add the steroid. She uses dexamethasone, but some doctors use kenalog. My urgency has decreased with my last two instills, and I had one today, so we'll see if the trend continues. I don't like the thought of using a steroid either, but I haven't noticed any weird side effects. My urine shows a lot of inflammation every time I give a sample, so I guess the steroid fights inflammation, according to my doctor. I'm sorry I don't know much about ulcers, but maybe someone else can chime in, or you can ask the nurse, sometimes they're a better resource than the doctors.

[curlycue]

self instills

I have been doing lidocaine heparin sodium bicarbonate since 2003 and I am starting to wonder if maybe my bladder has gotten used to it? I don't seem to have the same affect? my main issue is urgency it just never goes away, but I have found out that taking a pyridium every night helps? I am starting to think maybe I should try another combination of instills?

What do yo ladies think?

Does any one know if after a while I have been doing them since 2003 it loses its affect?

[tehuti88]

Thank you yet again for the information. I hope you can come back sometime and update on how this treatment is going. Is there any way you could ask how much (what percentage, or however they measure it) of the dexamethasone and other ingredients are used?

Oh, I was also puzzled about them finding signs of "inflammation" in your urine. Whenever they check my urine, it always comes back either "clean" or with some leukocytes, which I take to be indications of a urinary tract infection (presumably unrelated to the IC), since when I got quite a few of those they put me on an antibiotic for a few days. (Oddly, I never feel any different when they suspect I might have an infection!)

So I'm assuming your situation is different since they don't seem to see signs of inflammation in my urine, though surely my bladder must be inflamed else I could hold more in it. I'm wondering what the issue there is? Do you know exactly what it is they're referring to when they find signs of inflammation in your urine?

To curlycue, I'm truly sorry to hear the treatment doesn't seem to be working anymore after a time. I hope this never becomes an issue, though I have yet to find a treatment that works, period.

Hi again,

The instillations had helped with the pain, but I still had the annoying need to pee all the time. That's when the doctor decided to change the recipe and add the steroid. She uses dexamethasone, but some doctors use kenalog. My urgency has decreased with my last two instills, and I had one today, so we'll see if the trend continues. I don't like the thought of using a steroid either, but I haven't noticed any weird side effects. My urine shows a lot of inflammation every time I give a sample, so I guess the steroid fights inflammation, according to my doctor. I'm sorry I don't know much about ulcers, but maybe someone else can chime in, or you can ask the nurse, sometimes they're a better resource than the doctors.

[vanilla]

Hi

I have white blood cells in my urine at all times, even when I don't have a UTI. At first the doctor was sending it out for cultures, but now she doesn't bother unless I'm dying. This is common with IC. The body sends out white blood cells to fight inflammation caused by infections, however, in our case it's not an infection at all, but rather our lovely disease. Sorry I should have been clearer. I'll post my instill % next week, after I see the nurse.

[Sour]

Just wanted to say sorry your having such bad luck. I really hope you find something soon that points you in the right direction. All the best