Three Success Stories with URG101 - New Rescue Instillation

[icnmgrjill]

Title: The Long Road to Relief: Three Patients Find Relief with New Treatment Under Development

(Author: Judith Katz, Katz Creative. Reprinted with permission).

His marriage failed, his life was becoming more miserable with each passing day, and San Diego businessman Timothy Burks wanted to die. For almost a decade, Burks, now 62, found the unremitting pain and urgent feeling that he needed to urinate at least 20 times a day more than an inconvenience. For years Burks lived a lie, telling no one except the parade of doctors he consulted what he was going through. “How do you tell people your penis hurts, that it was a big factor in my divorce? This affliction was controlling my life so I made excuses at meetings, at dinners – I have to make a call, I have to blow my nose, I need a smoke.” (Burks doesn’t smoke).

“I can tell this story now,” he says. “I was in an airplane, stuck on the runway, and they told us we’d have to stay in our seats. I had gone to the men’s room before we got on the plane, but now I had to go again so badly that it was either they shut off the engines or I would urinate in my seat. So they shut the plane down. I can still feel the humiliation of walking down that aisle, but what could I do? The urologists I went to tried really hard, but they had nothing for me. Then, thank God, I found the top guy, Dr. Parsons, and the new treatment he helped create. Nobody should have to suffer the way I did!” Today Burks reports, “I can drive for nine hours straight, as I did recently, and not have to stop once.” He is pain free – and although not “cured,” he definitely has his life back. He is also seeing someone and hopes to remarry.

Interstitial cystitis, or painful bladder syndrome, is a recognized medical condition with increased frequency of diagnosis. IC/PBS is characterized by bladder pain, urinary urgency and frequency, as well as interrupted sleep and even bed-wetting, but few IC treatments exist and no approved therapies are available for PBS. Today, there are an estimated 10.5 million women and men in North America who suffer from IC/PBS.

The story brings together Dr. Lowell Parsons and Urigen Pharmaceuticals, a small public specialty pharma company dedicated to the development and commercialization of therapeutic products for urological disorders is also the story with a hopeful ending for millions of sufferers who had nowhere to turn. Recent results of a clinical trial for their new drug have been successful. Urigen’s URG101 is a proprietary pharmaceutical treatment comprised of lidocaine and heparin.

Almost 70% of those with IC/PBS are women. One female patient, Atlanta resident Tia Emerson, 30, a chemical engineer for Coca Cola, first experienced symptoms when she was 20, so she too had to endure a decade of horror before she took part in a clinical trial, was treated with URG101, and got relief, as did Burks. “From the very first treatment. It felt like a miracle. It still does,” she says. Her trial was presided over by another urologist who participated in the clinical trial, Dr. Jeffrey Proctor, at his private practice, Georgia Urology PA, outside Atlanta.

“I felt like I had to urinate constantly. I also had chronic pelvic pain and frequent leakage,” Tia relates. “I would get up from my computer and there would be a small puddle in the chair.” She also consulted several urologists, was given all kinds of drugs, alone and in combination. Nothing helped. “After a really painful cystoscopy, they found lesions on my bladder. They don’t know yet what causes them –but I was told the mucus membrane of my bladder was deteriorated. Still, this didn’t help my symptoms and things kept going from bad to worse. So I went online, went to chat rooms full of people desperate for help. Finally, someone told me about Dr. Jeffrey Proctor. My pain was a 10, the worst ever, the day I saw him, but it was my lucky day. He put me right into his clinical trial and I got the URG 101. Almost immediately, the difference was amazing. That night I slept through the night for the first time in years. For the next 2 to 3 weeks, the pain, the urge to urinate all the time and the leaking were 90% gone, and this continued for the next three months. Now I’m a new woman.”

In Fresno, Ca, Christine Barreto, a bright, brown-eyed seventh grader, lives the fun-filled life of a normal twelve-year-old girl. But just three years ago, Christine, who has three older brothers, was wearing “pull-up” diapers and was in the same extreme pain that both Burks and Emerson described. “The disease does not discriminate by age, gender or ethnicity,” Drs. Parson and Proctor relate, although it is underreported, and much more prevalent in children than reported. Dr. Parsons now has 75 children with this condition under his care. Christine’s condition was so bad that at one point, her parents, Winona and Wilson, report, "doctors wanted to remove her bladder, which they said the most inflamed bladder they had ever seen…she would have had to have an ileostomy, and perhaps wear a colostomy bag forever,” adds Winona Barreto, who is a nurse. “Imagine our relief to find this new drug!”

William Garner, M.D. founded Urigen Pharmaceuticals after a visit with Drs. Parsons at his urology clinic. There Dr. Garner met many patients and realized the shocking truth of how much these people were suffering, often in silence. In New York City, noted urologist Dr. Elizabeth Kavaler, author of “A Seat on the Aisle, Please! The Essential Guide to Urinary Tract Problems in Women” (Copernicus Books: 2006), says that URG 101 cannot come on the market soon enough. Dr. Kavaler, who is one of only five hundred women urologists practicing in the U.S., treats many patients with the condition, many of whom come to her after having been told "it's all in your mind."

Urigen Pharmaceuticals announced the exciting and most encouraging results of its Phase II multi-center, double-blind, placebo-controlled, crossover designed clinical trial of URG101 in patients with Interstitial Cystitis / Painful Bladder Syndrome (IC/PBS) on March 12, 2008. The drug was found to significantly reduce painful bladder syndrome or interstitial cystitis symptoms following a single dose. The results are based on an interim analysis of 21 completed patients. Additional analyses are ongoing, the results of which will become available over the next weeks, at which time a decision will be made regarding enrollment of additional patients, Dr. Garner reports.

This is a story that clearly touches the lives of not only the ten million patients, but also their loved ones and colleagues. With an estimated one in 30 people directly affected, this is a topic that deserves to be brought before the public, so that more people who suffer can find much-needed help and relief. For more information please visit www.urigen.com

[JanL]

Jill,
This is so exciting! Keep us posted on future research. I wish I could sign up for the treatment today. I am so ready to be done with this disease. Thanks for all that you do to keep this network running. It has been a lifesaver for me.

Thanks,

Janice

[glassd18]

Hoorah!!!!

[snowgirl]

I was so excited after I read this. I want in this study- we all do. I hope this drug works and is fda approved . This could make a big difference for lots of IC pt's. I am thinking for me could this be the med after 22 years of having IC that I could take and get of SS disability and return to work? I so pray for this study to roll on for approval by FDA. It will probably be years though.
Vicky

[leelee88]

Any kind of positive breakthrough is so encouraging..I look forward to hearing more about this treatment!

[kadi]

Wonder how the formula compares to my marcaine/heparin/sod.bicarb instillations?
They have been a miracle for me:)

[Moonheart]

I'm just sitting here stunned! After ONE DOSE! It will be a miracle!

I have the opportunity to work as a weaver in a job that is a lifetime career. It's a dream job and I got laid off after only 6 weeks of apprenticeship because even with upping my meds to 160mg of Oxycontin, I would still sit at my station with tears pouring out of the corners of my eyes. If I could have this work, I would go through rapid detox and get off all meds and go back to my job when they call me back. What a miracle that would be! My boss said that I have amazing talent, and to think that it's being wasted due to this disease makes me ill! We all have lost so much to this God awful disease! It's about time to take our power back!

I'll be praying for all of us.

[Moonheart]

Apr 7 2008 - Urigen Announces Early Closure of URG101 Phase II Clinical Trial based on Positive Interim Analysis Results

[marsi4]

It's great news that we all have been desperately waiting to hear. I'm just wondering though if doing just a regular instillation with Lidocaine and heparin would be just as effective. I have tried this combo and it didn't help me maybe because I didn't use the right quantity. I pray though that the reserach comes to an end soon and it is approved and available to all those suffering with this very painful condition.

Marsi4

[ICNDonna]

This one sounds really great! I hope I will be able to try it soon.

Donna

[sandymarie]

Maybe this is the thing that will get us all back to a normal life after having to suffer for so long. It would be a true answer to prayer. Thanks and please keep us posted.

J

[wolfaleena]

Was anyone in this community in the study?
Is this an instillation of sorts?
I pray that it is OUR miracle!
We all have been through so much for sooo long..
Please Lord, Let it be Your God send to us!!!

[Dianne]

But isn't this just a premixed combo of the drugs so many of us were already or have already using? Lico/marcaine/heparin/bicarb all of it just killed me. Is there a reason to think this is diff?

[Moonheart]

Is it an instillation? I didn't see in the article that it was an instillation. Can someone direct me to the exact place that it states that it's an instillation and not a pill or other kind of medication please?

Thanks!

[Moonheart]

Is it an instillation? I didn't see in the article that it was an instillation. Can someone direct me to the exact place that it states that it's an instillation and not a pill or other kind of medication please?

Thanks!


Never mind. I just saw the ingredients, that's close enough for me.

I actually haven't tried that combo. I have only tried Elmiron instillations and they don't really work for me. I'm going in for my second Hydrodistension at the beginning of May. (It's taken this long to work up the courage to do another one after the agony of the first. But I'm getting so much worse, I have to do something.) I'm going in for an Elmiron treatment on Tuesday and maybe I'll ask for a different treatment instead.

[GriffsMommy]

This sounds great but when I read lidocaine and heparin my first thought was if it is an instill. If it is I wonder if they are using something else in addition that is causing such wonderful results. I have been doing lidocaine/heparin/sodium bicarb instills since Oct and thoug they are cooling and soothing while they are in I really don't see any long term results from them. I hope that it's something different that would have the potential to help myself and others that aren't getting much help from heparin instills. It's very exciting no matter how it is administered to see what a great success rate they are having.

[Judy777]

My Doctor is Doctor Proctor He is one of the Doctors who took part in this study. Last month at our IC Support Group meeting he was telling us about the study and the results since it was going to be published in the Journal of Urology soon after that.

I did not take part in this study, although they are going to be trying it again soon and I would like to take part in the next sudy. From everything He told us I understand that it is a bladder installation and it's a cocktail of Lidocaine and Heparin. I don't know if there are any other ingredients in the cocktail or not. I do know that it is a larger amount of Lidocaine than what we use and also a much larger amount of Heparin than what most of us use for our bladder instills. I know some people mentioned this is what some of us use already, but it is larger amounts of Heparin and Lidocaine and hopefully this will become an "FDA" approved treatment for IC.

Take care,

Judy

[snowgirl]

Is it an instillation? I didn't see in the article that it was an instillation. Can someone direct me to the exact place that it states that it's an instillation and not a pill or other kind of medication please?

Thanks!

I went to drug web site and read about it - it's an instill. Vicky

[snowgirl]

My Doctor is Doctor Proctor He is one of the Doctors who took part in this study. Last month at our IC Support Group meeting he was telling us about the study and the results since it was going to be published in the Journal of Urology soon after that.

I did not take part in this study, although they are going to be trying it again soon and I would like to take part in the next sudy. From everything He told us I understand that it is a bladder installation and it's a cocktail of Lidocaine and Heparin. I don't know if there are any other ingredients in the cocktail or not. I do know that it is a larger amount of Lidocaine than what we use and also a much larger amount of Heparin than what most of us use for our bladder instills. I know some people mentioned this is what some of us use already, but it is larger amounts of Heparin and Lidocaine and hopefully this will become an "FDA" approved treatment for IC.

Take care,

Judy
My girlfriend with severe IC had this instill done with the study medication at the University of Michigan. I was so excited to tell her about it. She said it did not help her or make anything feel any different. Doesn't mean it won't work for me. VIcky I was bummed when she told me that. Vicky

[wolfaleena]

okay...so as i am understanding this from your posts about dr. proctor is it an instillation of larger amounts of heparin and marcaine. okay... if anyone has any other information please post.. thanks to all.

[wolfaleena]

griffsmommy: your little boy looks very cute~

[marsi4]

I would be curious to know what amounts are used as well. I did another instill last night with heparin and increased the Lidocaine. I used two thirds of the bottle and nothing. I would like to share what I think even though I'm not a doctor but using common sense. If the anaesthetic is not injected directly in the bladder tissue with a syringe or in a nerve or vein it is not effective. When we do bladder instillations the meds just flow over the bladder and I don't think any of the meds penetrate into the bladder tissue. If that's the case how can the anaesthetic work, it doesn't. I was so curious I put some lidocaine on my hand and it didn't numb it at all. I'm really surprized that some say that they get some relief with mercaine or lidocaine instills. It hasn't been my experience. When we go to the dentist the lidocaine is injected directly into the gum and the nerves that's why it is effective. Just an observation. I hope that they come out with something more promising. If I'm wrong in my thinking please let me know.

Marsi4

[Judy777]

Marsi4, When we do the bladder instills of Heparin, Lidocaine and sodium bicarbonate, the sodium bicarbonate causes the Heparin and Lidocaine to penatrate into the bladder wall.

Judy

[justice4j]

Hi,
It's my understanding that the Urigen trials are with buffered lido and heparin pre mixed just as Dianne said.

Anyone know if we are correct?

[sunfoodgirl]

Hi everyone,
I think that its an instillation, it seems to be what Parsons is talking about in the quick interview on the medication's website. He is very dedicated to his research, it seemed to me several years back (i live close by so I met him once) they were more pro instilling before trying oral meds to insure it is received into the bladder. some people have more success this way. This sounds really promising and i can't wait until its proven safe and available for us to try!!!

I really wish we could know about research as far as a gene, a cause, a cure, how to regenerate the mucosal lining. I'm curious what the focus is on cause so far, what's been ruled out etc. I'm sure these fabulous doctors are working on it but it would be cool to see that research too! Its difficult because a lot of our pain is so immediate and so treating the symptoms has had to com first so we don't all go insane :)

I'd love to read if anyone has tried this or has done the elmiron/heparin intilations (either the older way or this new one!) and what your experience with it is.

love and light :pray:
Shelley-Jane

[Dianne]

Doesn't buffered though just mean that it has bicarb in it? I sure can't see what's new here although I'm happy for those it's helping.

[marsi4]

I spoke about it with my uro yesterday and he said that the bladder tissue is softer kind of like our lips and it does absorb some of the meds that are instilled. I just pray that they come up with something soon. We've been waiting a very long time for something that will work or help and praying it will come soon.

Marsi4

[crazy_beautiful]

I am new to the site, but not to IC, this sounds wonderful. I do home instills and would love to give this a shot.

[mcdoll]

I've actually read a study about heparin injections for ic, not in the bladder though, and the results were very positive.

[Brenda01]

I must have missed the results of the heparin and lido results that were so positive??? I would really like to know. I did a haparin/lido instill once with my uro and it felt great for 2 days, but when it wore off I was back in a flare! Is it like that for everyone doing instills, or does it get where you can go further and further between?
Thanks,
brenda

[dminton]

What I want to know is; for those of us already doing the heparin/lido etc. instills at home, where do you now get the heparin due to the recall? My pharmacy tried yesterday for a long time, and could not come up with a source!

I also have not found them to be a cure-all, just a nice break for a few hours. I use heparin 1 cc, 10,000 U; lidocaine (preservative free) about 4 cc, and marcaine (preservative free) about 4 cc. No bicarb. Is the bicarb important to use?

[Sheryle]

The heparin is not absollutely necessary with the instill. My Doc advised just to do the Lidocaine and Sodium Bicarb. It works the same for me. Wishing you the best!

[dminton]

What is the sodium bicarb supposed to do besides make the urine alkaline? I thought that the heparin was supposed to help repair the damaged GAG layer of the bladder wall.

[Sheryle]

Heparin is usually stored within the secretory granules of mast cells and released only into the vasculature at sites of tissue injury.

[dminton]

That's interesting but I'm not sure I understand. Do you know what the purpose of using heparin is? And what does the sodium bicarb do? It seems like Dr. Parsons started this whole instill thing with the heparin in mind. And maybe sodium bicarb as well, I don't remember. Thanks.

[mcdoll]

Sodium bicarbonate is just baking soda, it's supposed to alkalize your urine and make it less irritating, but recent studies where they instilled acidic liquids into some subjects bladders and alkaline into others found there was no difference in the pain levels of the two groups. Heparin is an anticoagulant, I have no idea though how it's supposed to help people with i.c.

[mich2604]

ive used lidocaine for my vulvar vestibilitis, it does stay numb for a little while.

but i cant imagine in the bladder with urine passing thru, it helping for weeks like some of the patients reported. Unless, like someone said there is something else in this mixture.

I was just saying today how we need something to just permenantly coat the bladder so we can all live again.

[tesschron]

I was researching instillations earlier today and found this description on why sodium bicarbonate is included -

The bladder lining has such a strong mucous barrier that normal lidocaine has difficulty crossing through it. However, researchers (such as Richard Henry-Canada) noticed that if you alkalinized the anesthetic with a precise amount of sodium bicarbonate, it dramatically improved its ability to pass through the mucous to reache and soothe the irritated nerves and tissues beneath.

So it make sure that the lidocaine penetrates the bladder tissues to stop the pain.

It does appear that the only purpose of the heparin or Elmiron is to rebuild the lining. I have to question whether it is really necessary for the short term relief, or if the hope if that with enough instillations and direct application, it could be more effective. Orally, only about 6% of the Elmiron makes it to the bladder, maybe direct application would speed up the process? But I wonder if it might not increase the side effects too, if more drug stays in the body, or if being directly applied bypasses the worst of it?

terry

[lisabar36]

This sounds so wonderful. I can't wait to try it. I am seeing a doctor in July that participates in alot of clinical trials, I am curious if he has heard of this. I will ask and let you all know what he says. Instills for me, if done properly and gentle, were a life saver. That was the first time in all my years with IC, that I felt some relief from the pressure and frequency. I remember after my very first one, I was thinking this is to good to be true. So I am so excited for this.

[Matt007b]

Any new news from this wonder drug that *might* be coming out? I was going to ask my urologist about this at my next visit in August :)

*also anyone ever heard of IC going all the way up to the kidney? Like irritating the lining? I'm in serious pain/nausea and they're saying it's IC.. didn't do very well on elmeron but i'm doing it again with a small dose of prednisone for the next 6 days.. sucks!

[snowgirl]

What is the sodium bicarb supposed to do besides make the urine alkaline? I thought that the heparin was supposed to help repair the damaged GAG layer of the bladder wall.

I read some lecture notes from a Dr. Parsons IC specialist that a NP friend took and I think I remember sodium bicarb helps with the absorption of the lidocaine. Also, sodium bicarbonate is a buffer so it would also help reduce pain and inflammation. Vicky

[justice4j]

Hi,
Dr. Parsons is my uro and has been for 10 years.

If you google Urigen 101 studies I think it is what he has been treating me with for the past 10 years:
Heparin
Lido 4%
Bicarb 8.4%

It's an instill and yes it helps, temporarily. I have to instill X3 per day. Now he changed the Heparin to Elmiron 100 mg X2 caps twice a day with the liquid stuff.

[Wolfe]

Yes to the kidney question. My first uro scared me into being very careful with my diet (he was trying to scare me into quitting work) by telling me that this was a serious enough diagnosis and we didn't want it spreading to my kidneys, and that if we didn't take care of it, it would. Is that everyone else's understanding too?

[justice4j]

Judy,

I think I have read somewhere that IC doesn't spread to the kidneys. I just can't recall where I read it.

I'm a worry wort like you and have a 17 year nursing background prior to becoming disabled and a "Dr. House case." so, I have the added worry wort with knowledge thing.

Getting sleepy and shoulders are hurting....try to research that for you soon.

Tomorrow is manicure and pedicure day. I need a treat!

[justice4j]

http://www.stronghealth.com/services/urology/conditions/icoverview.cfm

[justice4j]

http://www.clinicaltrials.gov/ct/show/NCT00256542?order=10

It's heparin and alkalinized lidocaine, for all of you who have been wondering.

[Matt007b]

Thanks for those responses..

Yeah I think I have a small IC problem going on but my hands are sweaty..severe nausea at times (esp. if I have soup or mass water) and I have upper left abdominal pain, I just went to a kidney specialist and he was sort of baffled but yeah.. I think i've got other problems then just a IC problem (I go like..once a day if that I do have bladder pain but..)

anyway again thanks for those responses I was curious to see what has been going on with the clinical trials.

[Boozer05]

I know this reply is about six months late, but I have some new information about this thread...

I just talked to Bill Garner, who is one of the physicians behind this new treatment, and it looks like they are still looking for financing for the development of this drug. It sounds like the drug is ready to go, has past all the required benchmarks, etc... but due to the current economy they simply can't get the financing to move forward.

However, it sounds like this is not the miracle cure that these stories below might suggest. While this drug will probably work very well to provide temporary relief, and maybe even long-term relief in some, it is a rescue instillation designed to help you get through flares... not a long term solution on cure. If you're someone who suffers from the occasional flare, this may be the perfect solution, but if have chronic pain that never lets up, it may not be so useful.

That said, it's definitely something that could help a lot of suffers, and it deserves to be out there... hopefully they will find some financing soon.

[lisabar36]

I asked my doctor about this yesterday, he is one of the top IC docs in Pa, he said he never heard of it and if its called urg 101 its definitely over the counter. :confused:

[tesschron]

I've followed the posts on the U101, and still don't understand this - how is this different from the heparin-alkalized lidocaine formulas that many doctors follow now?

terry, getting rescue installations once every 3 months for 11 years

[snowgirl]

I've followed the posts on the U101, and still don't understand this - how is this different from the heparin-alkalized lidocaine formulas that many doctors follow now?

terry, getting rescue installations once every 3 months for 11 years

only thing I found when I did some reading on drug website- is higher concetration of heparin in that vial. Everything else was the same you do for instills. Increased heparin concetration. Drug companies needing money sorry not to be rude but I put them drug companies right there in President Health Care Reform. They just keep rising prices and no one regulates that. Drug companies have money. My friend is a drug rep in Ca won't say name and it' a big one or the drug and it has promising future for it's patients. Which is wonderful. He had a dinner to go to Sat in CA . Barry Manilow and few other stars there. He had 10 dinner plates at his table 5,000 for that table . Of course he writes it off. 5000k for dinner and drug lecture little high there
I will ask my uro world renowned about it. IF Lisa's well known uro did not know about it- still in some early stages. Increased heparin to 40,000 unit if I remeber right in the vial. Will wait and see. No bailout for drug companies is coming on the plan. VN

[icnmgrjill]

It's definitely NOT over the counter... this is the first legitimate bladder instillation that may receive FDA approval for IC in decades, formulated by C. Lowell Parsons. Just give it time... that whole FDA approval process takes time! We've been talking about this for atleast two years so far...

Jill

[bjt]

interesting info! and for me, the best news is the orginal article mentioned a different urologist in NYC that I hadn't heard of. and it looks like she takes my insurance!
so I'm going to try and get an appointment with her. that's very exciting! :-)

[lisabar36]

I was suprised he didn't know about it, but if its not well known yet thats probably why. :)

[BT2008]

I just went to the Urigen website looking for the amount of Heparin included in their combo version, and I can't find it anywhere.

But I am currently using Heparin 40,000 units along with Marcaine (plus Kenalog and Sod Bicarb) in each of my instills -- twice per week.

My insurance covers the Heparin and I only have to pay a $20 co-pay; and while my insurance does not cover the Marcaine, it is only around $10.00 for a 100mL bottle which provides for 10 instills (five weeks worth).

I can't help but wonder if/when this drug becomes available whether or not the price will be jacked up to a higher price/co-pay because of the patent rights that allow for a much higher price for a "name brand" drug.

From my experience, it would be no more trouble to load a syringe from two different bottles than it would from just one. Therefore, it may turn out to be much less expensive to buy the drugs separately, rather than already mixed. Could this be a "packaging ploy"...??? (Or am I already so jaded that I don't trust very easily anymore???:rolleyes:)

Does anyone have any thoughts on this?

~Beth

[wolfaleena]

dear beth: i don't think that you are jaded at all.. you sound like an intelligent person who has just had a lot of experience with the medical community, drug companies etc and know how things work.
BTW, do u get any relief from the instills?
I tried them years ago, and they just aggravated my ic and i had terrible urethra pain that wouldn't go away .. i occasionaly have to self cath, because i don't empty my bladder all the way and after trying all types of catheters and all sizes ... i still have a ton of trouble with my urethra freaking out spasming and pain pain pain...
I hope you are getting relief.. A lot of people are getting relief from them.
God bless you! You may be on to something about the cost being bumped up!

[BT2008]

Hey Wolfaleena,

It is kind of hard to say whether or not I am getting any real "relief" from the instills, above and beyond the few hours that the Marcaine actually numbs my bladder. Some pain "reduction" yes (from say a 7 to a 5 on my pain scale)...but "true relief" (meaning 0-1 for an extended period of time) ... no, not yet.

I am also on 24/7 pain meds, so the only "test time" I have is during the few hours before my next dose, when the last dose is wearing off--and--AARGH!! I can tell "exactly when" the pain meds run their course! And this "test time" is the only way of determining whether something other than the pain meds is actually helping or not.

As of today, after 12 instills, I am most definitely still in pain during these "test time" periods. But, I would venture to say that on the day following an instill, this pain is not always so bad as to require a breakthrough pain med before my next extended-relief dose. So, maybe the Kenalog is temporarily reducing the inflammation for a day or so, but after that? Unfortunately, I would have to say "no"... not yet.

I am keeping a very detailed pain journal and this is something that I am going to start tracking soon. And since I do the instills twice a week, then hopefully I will be able to see a pattern soon.

But, I desperately needed to get my 'totally out-of-control-pain' under control first, so I could start to think again like a rational human being!! Now that my sanity is returning more and more everyday :lmao: I am hoping to pin down some of the things that have made the pain so unpredictable in the past.

But, as far as the Heparin is concerned, I would like to think that it is working--slowly but surely--to help rebuild my bladder lining. At this point I am assuming it is just going to take longer for me than for some.

~Beth

[BT2008]

Hey Wolfaleena,

It is kind of hard to say whether or not I am getting any real "relief" from the instills, above and beyond the few hours that the Marcaine actually numbs my bladder. Some pain "reduction" yes (from say a 7 to a 5 on my pain scale)...but "true relief" (meaning 0-1 for an extended period of time) ... no, not yet.

I am also on 24/7 pain meds, so the only "test time" I have is during the few hours before my next dose, when the last dose is wearing off--and--AARGH!! I can tell "exactly when" the pain meds run their course! And this "test time" is the only way of determining whether something other than the pain meds is actually helping or not.

As of today, after 12 instills, I am most definitely still in pain during these "test time" periods. But, I would venture to say that on the day following an instill, this pain is not always so bad as to require a breakthrough pain med before my next extended-relief dose. So, maybe the Kenalog is temporarily reducing the inflammation for a day or so, but after that? Unfortunately, I would have to say "no"... not yet.

I am keeping a very detailed pain journal and this is something that I am going to start tracking soon. And since I do the instills twice a week, hopefully I will be able to see a pattern soon.

But, I desperately needed to get my 'totally out-of-control-pain' under control first, so I could start to think again like a rational human being!! Now that my sanity is returning more and more everyday :lmao: I am hoping to pin down some of the things that have made the pain so unpredictable in the past.

As far as the Heparin is concerned, I would like to think that it is working--slowly but surely--to help rebuild my bladder lining. At this point I am assuming it is just going to take longer for me than for some. Only time will tell...

Also, I have had no problems with cathing, other than moderate initial spasms when the cath goes in. I have used both an infant feeding tube as well as a 8FR 10". I am also not prone to UTI's or urethral burning either. So neither of those are a problem for me.

~Beth

[BT2008]

Also, I have had no problems with cathing, other than moderate initial spasms when the cath goes in. I have used both an infant feeding tube as well as a 8FR 10". I am also not prone to UTI's or urethral burning either. So neither of those are a problem for me.

~Beth

[wolfaleena]

Best of luck Beth...
do you go to pain management. i was put on methadone last week for pain control . i am crossing my fingers... i feel as if it is wokring better than anything i have taken so far. only been on it for a few days. i'll keep you posted. i have had IC for 15 -20 years and have been through a lot of treatments, meds etc. like a lot of people that post on this board. so,, getting some pain relief has been great... but i am still crossing my fingers. i have had things work in the past, and then for no reason that i could figure out, just stopped working. we'll see... God Bless you!

[BT2008]

Best of luck Beth...
do you go to pain management. i was put on methadone last week for pain control . i am crossing my fingers... i feel as if it is wokring better than anything i have taken so far. only been on it for a few days. i'll keep you posted. i have had IC for 15 -20 years and have been through a lot of treatments, meds etc. like a lot of people that post on this board. so,, getting some pain relief has been great... but i am still crossing my fingers. i have had things work in the past, and then for no reason that i could figure out, just stopped working. we'll see... God Bless you!Hey Wolfaleena,

Thanks for your support and encouragement!! What is up with these drugs that work for a little while and stop working all together? And it's not just the narcotics either! I wonder if it is something intrinsic to IC, such as a really screwed up immune system, or if sufferers with other chronic illnesses go through the same problems?

My only experience with a pain specialist was also the absolutely worst experience I have ever had with any doctor in all of my 49 years! Up until then, my urologist had been overseeing my pain med therapy, but he was hoping that a pain specialist would be better equipped to oversee my use of these narcotics than he is. However, when I told him what happened at the pain doc appt, he got out his pad, wrote me another month's worth of scripts, and said he would ask around for a different pain specialist. So, I assume he is still willing to help me manage this god-awful pain, which suits me just fine because we have sort of formed a bond around my experience over the past 6 months. I knew nothing about IC when I first saw him and he primarily knew textbook IC treatment. So, in spite of several failed attempts at traditional therapies, we have been muddling through this horrible ordeal together! I have come to the conclusion that patient/doctor trust must be well established to appropriately deal with this terrible disease.

While I would rather continue seeing only him, I don't really care who gives me the scripts for the pain meds--just as long as I get them!! Now that I know what life is like with the pain meds versus living without them ... I can't and won't go back to living without them again! No one should have to live like that; it is nothing short of cruel and inhuman treatment--and refusing to treat severe IC with proper pain meds is way beyond the bounds of inhumane treatment.

I hope the methadone works for you. Just like the "who" ... I don't really care "what" kind of pain meds I take--just as long as they work!

I will cross my fingers for you too! And do keep me posted...

~Beth