Is IC a progressive disease?

[Rita_Lorraine]

Hi all. I was just wondering if anyone knows if IC is a progressive disease that gets worse over the years. I was diagnosed last year. Had a brief remission, just had another flare up, but am feeling a bit better since I changed my diet. I'm just hoping things will get better as time goes on. Also, I heard taking Elmiron is hard on the liver and that we should have it checked often. Has anyone ever heard of that? Any advice will be helpful! Thanks!:puppy: :cat: Hugs to you all, Rita_Lorraine:grouphug:

[ICNDonna]

IC is not considered to be a progressive disease. I have read that a very tiny percentage of IC patients do progress.

In my case, my IC did its progressing before I was diagnosed (about six months). That was 29 years ago and, like you, I do much better than when I was first diagnosed. I think it's because I have learned which foods and drinks I need to avoid and which treatment work best for me.

Like most ICers, I do have occasional flares, but most of the time I feel pretty good.

Sending gentle hugs,
Donna

[Kathi]

I agree, once my IC was dx and I was able to find my "triggers" I have seen an inprovement. Now I just get a flare every now & then. No more constant peeing/pain.. :hi: Kathi

[Dixiefireball]

within the first year my ic went to chornic but the doctor said i had it for many years. now since i have treatments I don't believe it will get wrose matter of fact i'm much much better then i was when i was first dx even tho mine is chornic at least most of the time now its under control.
sending you hugs and prayers
Rhonda.

[Donna L]

I had my 3 month checkup last week (dx'd in Jan2004)and I asked my doctor if this was progressive. He said no, in fact,once the treatment (elmiron seems to be helping) becomes fully effictive, I should actually start to feel better. From his mouth to God's ear!!!:pray: ..........,Donna L

[CeeCee]

My dr. did do a blood test to check my liver. All was fine. It would probably be wise to have a yearly blood test to make sure all was good with the liver.

CeeCee:)

[blue]

How weird. My doctor said the potassium test would indicate IC ealier than the cysto/hydro. That made me think it would progress. He never said it, I just took it for granted.

[kadi]

I wonder if people are getting diagnosed earlier now, if that prevents people from doing the wrong things & getting worse. The doctors I saw in the beginning (my primary care doctor & a urologist) both told me to drink lots of cranberry juice. That advice landed me in the ER later that night.

Anyhow, a doctor I just saw said that it is not always progressive, that if it does progress, it's usually just in the first 12-18 months...

[Donna L]

Here's my 2 cents worth:D If I understand how IC works and damages my bladder,untill it's diagnosed, the gag layer will continue to be compromised. Once we are dx'd and given medication, that rebuilds that layer, we are not "cured" but are able to slow down or (hopefully) stop the "progression" of IC damage. The difficult part seems to be finding that magic medication. But I now understand that I can play a huge part, by my food choices, and use of the over the counter help. This site has given me so much ammunition!! I'm so grateful for those who take the time to share what they have learned by "trial and error"so that I can avoid those same mistakes. This is an awsome site!!! :dance: We can stop a lot of hurt :headbang: by listening to good advice:thumbsup: Thanks to all who post...........Donna L

[Katrina]

I would say Donna L is on the mark. I progressed until diagnosis...since then progression is much slower....but still exsists....unfortunatly I was already in constant severe pain at diagnosis....catching it before that could mean a huge difference.

My worry is for people who only use treatments that help the symptoms....that can turn into a problem later. (I have seen this happen)

Otherwise stopping or slowing progression is very possible...infact turning things around is.

Best Wishes

[jeanniebug]

I'm glad to see this question come up. My uro said it's not normally a progressive disease but I wondered if it could be for some people. My uro is not concerned about checking my liver while on the Elmiron at all...he brushes it off as no concern. I've been on Elmiron 7 months now. However, my family doc (whom I like much better than my current uro) takes excellent care of me, and he requested a liver check on his own. The test came back fine. He said get it checked at least once a year while I'm on the Elmiron. I feel better knowing all is ok so I will continue to take my family doc's advice. It seems there's no in between, the docs I've asked either completely blow it off or insist it should be done. :confused: I was just dx 7 months ago and so far no improvement but I am looking forward to that day. Take care-

[Alexa]

All the research I've done over the years has indicated that IC is not progressive. Mine progressed rapidly until I was diagnosed and started treatment. I suppose most people are similar.

Take care,
Alexa

[dawnfawn]

If IC is not progressive why do we have to stay on elmiron forever according to the uros. If it is cured or arrested with a new gag layer you should be able to get off elmiron. Also when I asked my uro to reexamine the bladder he refused. I see him once a year he never examines me and he charges my insurance for an office visit at 300.00. He just renews the rx. Is this fraud?

[ICNDonna]

The term "progressive" refers to a condition that keeps getting worse as time goes on. IC almost never does. It is not a curable disease at this time, however, and that's why we have to keep following an IC diet and continue with medications.

Hopefully one day soon a cure will be found and we'll all be able to stop treatments.

:kiss:
Donna

[Alexa]

dawnfawn, I also replied to your question on the Elmiron board.

Take care,
Alexa

[Audrey Rose]

Here's what I have been told for what it's worth.
My case has been an early diagnosis and I am definitely worse than when this first began last year. I also have yet to reach remission. My URO says the first year or so is the acute phase--when the disease first becomes pretty constant. During that phase, there can be a progression or worsening of symptoms. If you are diagnosed quickly, it can still happen after diagnosis if you are still in the acute phase. Then it should plateau and that's when the disease becomes chronic and progression usually ceases. Remission is more easily attained in the chronic phase although it is difficult to tell when one ends and the other begins. It is not necessarily at the first remission. Past ICers typically suffered for several years before diagnosis and were therefore already in chronic phase when they started treatment, and most didn't notice any progression after diagnosis. Once the first remission is achieved, the bladder lining is able to finally heal some. When there is a flare, the now educated patient knows exactly what to do to keep the flare from getting to such a severe state and the bladder tolerates the flare better because it isn't so damaged as it was the first time. My URO says once remission is reached that first time, things get better for most patients, with the exception of frequent UTIs and other conditions that can cause further damage to the bladder.

It is like the first sunburn of the season. The skin burns like heck and it is very painful (like the acute phase), then it blisters(ulcers), then it peels and you want to claw your skin off. (sorta a progression) Then it heals. (remission) The rest of the summer, you might get burned again, but it is never quite that bad. The skin is healed and more tolerant since the skin now has some brown color to protect it (kinda what the IC meds do for our bladders) and we have the aloa vera handy and ready to use quickly. We rarely blister or peel after that first burn. Our skin just tolerates it better the rest of the summer. (chronic phase)

Hope that makes some amount of sense.

Hugs,

[creatingkarma]

I believe that I've had IC for 12 years. However, I was only diagnosed 4 years ago. The urologist did a cysto/hydro & saw the hemmoraging. The only advice that he gave me was to not drink caffinated beverages. Well, now 3 more years have gone by & my IC has definitely progressed since then. Before, it would only flare up once in a great while. Now, I am in constant pain daily. I am seeing a new urologist who has done more than my 1st. Like, telling me about the IC Diet (more than just caffiene, thanks a lot dr #1). Unfortunately, none of the treatments (elmiron & DMSO) have worked for me & this uro isn't offering any pain meds. So, I'm off to my 3rd uro next month.

I may be wrong, but it is my belief that if the 1st urologist would've given me the real IC diet or even tried a few treatments on me, I wouldn't be as chronic as I am today.

Karma

[Donna L]

I think you did an excellent job of explaining. I work well with medafores. There are many with IC that also have other painful conditions. I have dealt with IBS for 5 or 6 years, but unfortunately IC is the "mother lode" in conparison. And it becomes active more easily and doesn't respond to a "pat treatment method" I'm still looking for my first remission. I have a uro who is trying to keep informed, and I am not his only IC patient(that word does not describe those of us who suffer with IC) so unlike some who have posted that they are unhappy with attitude and management (unwilling to support their needs for pain medication, unsupportive) I know I'm blessed. Thanks Audrey Rose,you made the process very understandable:flower: .......Donna L

[Donna L]

Karma, Th doctor I just wrote about in my last post is a good doctor,but his sendoff was to tell me that I would find really good info on the internet,I didn't take that as an uncaring doctor, but instead one who is not afraid of a patient that has gathered knowledge on her own. When I went to see him, for my checkup I brought a copy from this website about the foods that don't play nicely with IC and he was honestly pleased to receive it He knew the "big dog ones" tomato,cranberry,coffee, chocolate caffinated bev,but triggers like bananas,watermelon peanuts seened to surprise him,but he sat and read the list,and was pleased when I said I had brought it for him, Doctor educating patient educating doctor Thats a GOOD circle.His arragance factor is a minus!!!I think I'm lucky........Donna L

[rachelm]

I don't know how the progression works for some people but I know that in my case I have definitely progressed. 3 years ago I began having burning for months at a time. It was dismissed as cramps and UTI's by my gyno. He gave me antibiodics every couple of months yet never did a culture. Last year when I moved and saw a new pcp I was referred to a uro. He was a jerk and suggested that I might have MS but wasn't wanting to make me pay for the expensive test. By the time I finally got a new urogynocologist I had been through months of terrible pain, ER visits, and tons of tests with no answers. I thought though once I had a good treatment plan and had taken Elmiron for 6 months I would have the disease under control.

I went for 5 months with very few symptoms but then the bad flare started at my worst season late winter. I'm still dealing with the flare and have now recently gone as far as getting the interstim because of the severe retention and spasms. I have good months but my bad months are getting more severe even though I'm watching my diet, taking tons of different drugs, getting up to 5 bladder instilations of marcaine/heparin in a week and making time to rest. I had to go on medical leave for a month and a half this year. So as you can see I feel like for whatever reason I'm one of the few who's IC has progressed even after diagnosis. I had remarkable improvement after 5 months but then tanked badly. My hope is that the InterStim will help keep things under control better.

I have always had bladder problems since I was 4 but I always thought they were infections. I still have many recurring UTI's which may be why it sends me into a flare from the damage that they cause to the bladder. I don't know. I'm continuing to ask when will this disease plateau. I'm only 31 getting married in June and very much wanting to have children and live my life as normal as possible. I'm a determined person but it still knocks me down to where I can't function for big stretches of time. I guess I can say that maybe I was a little bit better this year because I wasn't ever admitted to the hospital but it's not much better. I allowed myself to take a leave that I wasn't able to take last year but I was still having to increase my pain meds. I don't know how much more of this I can take. I am just looking forward to the summer months because at least for a while I can live my life and do the things I enjoy. It seems to be the best season for my symptoms so I guess I should be gratefull for those days. Sorry to vent.

Is there any one else out there that feels like their disease is progressing?

Rachel

[tigger_gal]

I have definitely progressed since I was dx'ed. I tried the elmiron for 2 years with no success :( I had the interstim put in and I have had my urgency controlled and some frequency relief. My frequency has gone up alot, but I would do the interstim again to control the awful urgency. I am in pain dailyfrom IC and I hurt more and more as time goes on so in my opinion yes IC dose progress in some patients.
Brat

[hsweet1968]

I'm very concerned about progression as well. I've probably had the disease since I was born, and had surgery on my bladder when I was only 5 years old.
I went into remission at puberty, and things gradually got worse once I was sexually active. Now that I'm 36, I've had surgery 3 times for fibroids, most recently a hysterectomy, and it's at the worst it's ever been.
My IC is complicated by recurrent UTIs, so I'm probably one of those people who will find it hard to have a remission since the damage is probably fairly extensive and continues with each UTI.
Being in Canada, I'm just sitting here (very uncomfortably) waiting for a referral to a specialist (which could take months), and hopefully once he starts some kind of treatment things can be under control far more than they are now.

[rachelm]

HSweet,

I just wanted to encourage you about possible remission. I too have had frequent UTI's in fact last year in a 3 month span right after my diagnosis I had 8 culture documented UTI's. I finally went on a low dose antibiotic and was able to get the UTI's to stop long enough to go into remission. I know that some ICers are like us and do get recurring UTI's but many do not. A member of my dr. staff once told me that the nature of IC was that we think we have an infection but we really don't. I was trying to get in for a culture as instructed by my dr. as soon as I noticed symptoms. I quickly referred her to my chart and asked to speak with his nurse since she obviously wasn't considering my individual case. My dr. later told me to always make sure that the techs do a urine culture before each bladder instilation and in addition insist on having it spun for quick indication of an infection. I never took no for an answer from her again and soon after she left his practice.

I did go into remission over the summer last year but I had finally stayed UTI free for a few months plus I was taking several meds to control the IC and pain. Unfortunately I did go through a really bad several months during the late winter and early spring again this year but because after the first few infections I asked for a low dose antibiodic I was able to have fewer recurring UTI's. I know that I need to start on a low dose course now as soon as I start a flare and have to start getting bladder instilation or self-cathing due to retention. Next year I will know even better when to ask for it and my dr. and nurse fully support me taking charge of that. In one year I have NEVER been wrong about a suspected infection so my nurse relies on my instincts to tell her when I need a long course. Hopefully you will be able to start getting treatment with a specialist so your bladder can heal some and hopefully control the UTI's. I know your pain and it's even more frustrating when you don't have proper medical care. My first urologist didn't even take regular UTI's upon reports of symptoms. Please hang in there and see if your primary care dr. will give you a low dose antibiodic that might help get the recurring UTI's under control.

Rachel

[hsweet1968]

Thanks for your encouraging words Rachel.
I did ask for a low-dose prophylactic antibiotic from my GP, and once I've finished my current dose of Cipro, I'll be trying that to reduce full-blown infections.
In the meantime, I just try to keep a positive outlook and take each day as it comes.
I really appreciate your support and feedback!
Helen
:)

[skershner3]

First of all concerning the liver function tests and Elmiron, my urologist told me that he was required by the FDA to do a liver function test every three months as long as I was on Elmiron. Second, you can buy home UTI kits from your local pharmacist & I also think that they have them for sale on this site. I have purchased those, they work just like at the urologist, you pee in a cup and use a dip stick to check for the infection. It takes about 2 minutes to find out if it is negative or positive & has slowed down my visits to the doctor and urologist to have them check. When I was first diagnosed I was miserable. We found the right combination of medicines and I went through several years of remission. I did & ate pretty much what I wanted and felt like I wouldnt have further problems. After a prolonged period of stress it "reared its ugly head" and has been with me since, the worst problem is the terrible pain that is constant. The hydrodistention that was done on diagnosis and the one that was done recently showed little or no improvement and didnt appear on exam to be any worse. I have found that STRESS is definately a big trigger when it comes to IC as I am sure alot of others have as well. I feel that my IC, although I didnt have any previous problems other than regular UTI's had progressed to chronic when I was first diagnosed. Even after Elmiron treatments my urolgist didnt see alot of difference but I do think that it helps my pain so I am sticking with it. I will do anything to get some relief. Hope this helps. Susan

[Traysmum]

My IC has got worse over the years. I was first diagnosed in Dec 1998 but I had symptoms well before that. Since being diagnosed I have got steadily worse over the years. I used to get up once in the night and now I can average 5 times with 20 being the worse.

My uro in OK, who is also researching the disease, said some IC patients get worse and some stay the same or go into remission for a while. there is no cure yet and it will come back one day.

I suppose I am one of the unlucky ones in which it is getting progressively worse