Can It Still Be IC if Pyridium Doesn't Help At All?

[kingofpain]

I don't get it.
If the mucosa of the bladder and urethra is inflamed as in IC, and if I have IC (which my urologist says I have), and pyridium numbs the mucosa, then...
WHY doesn't pyridium relieve my burning AT ALL?
Does this mean I can't have IC?
Thanks.

[Briza]

NO!
Pyridium works very well for some and not at all for others for symptoms of IC. And for others it may work very well for bladder symptoms but give them intolerable side effects and they have to discontinue use. Oh gosh, no, how well pyridium works for any given person is by no means a way to prove or dis-prove presence or absence of IC...who told you that????? Hopefully not a dr???:confused:

I would like to suggest that you visit the new antispasmodic and anesthetic forum that Jill recently created on ICN. There you will find much info, esp in the first few threads, about these types of meds...often called the pee orange or pee blue meds. These types of meds help MANY with IC symptoms, but each one of us seems to have our favorite, and for others any of these meds may not relieve symptoms at all...as goes with any IC/bladder treatment.

Please speak to your dr about this and please see the new antispasmodic forum for the excellent info it provides about these meds and paitent experiences with using them. Take care....I hope this helps some....

PS>here is direct link to that forum, just click here: http://www.ic-network.com/forum/forumdisplay.php?f=194
The threads describing the ingredients and such in these types of meds are in the first threads, at the bottom of the page

[vm]

Pyridium helps me if I have an infection, but never really did much at all for my regular old IC symptoms.

[elamar]

You need to ask your doctor about another class of anti-spasmodics. You should ask about urelle, utira-c or prosed. Ditropan xl also worked for me. The first three santize your urine and turns it blue. Pyridium didn't work well for me either. It is only meant for short term usage while the other are safer for long term use. I use utira-c and have been on it for at least two years now. I can even skip some days but usually just need one first thing in the morning. Be careful about overactive baldder meds (oab meds). Your doctor may try to recommend stuff like vesicare, enablex, sanctura etc. They just don't tend to work well with those with IC. You need the stronger antispasmodics. Some doctors may have free samples for you to try. My doctor gave me a two week suppy of both urelle and prosed to see if I could tell any difference. Urelle worked fine so we switched to utira-c which at one time I was told was the generic for urelle, but now it is more like a sister med to it. It cost less money and worked just as well for me. Prosed tends to be a little more expensive. It all depends on your insurance. Hope this helps. Good luck to you.

[Briza]

Pyridium helps me if I have an infection, but never really did much at all for my regular old IC symptoms.

Yeah, it does appear that pyridium and its OTC versions most likely were originally intended for mainly quick symptom relief from UTI while waiting for antibiotics to kick in.

But many of us with IC do take it and get excellent relief from IC symptoms....many, but definitely not all, as VM says above.

Pyridium is a wonder med for me but I know that it is usually intended for short term occasional use b/c of possible liver or kidney problems somewhere down the road if used daily, RTC, on longterm basis. Thankfully I do not have symptoms everyday and so I don't need Pyridium everyday and when I do need it no more than one dose a day is fine for me. If I needed something daily longterm I would definitely talk to my dr about one of the pee blue meds that seem safer to take regularly longterm...like one of the ones Elamar mentioned. And many patients seem to find those meds more effective than Pyridium, so those are some that you should probably discuss with your dr, Kingofpain, because for many of us these meds are a very important part of our symptom relief treatment regimen.

I hope you find what works well for you...if one doesn't work, try another...these types of meds are very similar, but may have one slightly different ingredient or amount of ingredient that makes all the difference for a patient...that is why I said that seems like each one of us seem to have a preference for one over the other, even tho they are all very similar. Take care!

[born2swim]

I find that Ultira-C works better than Urelle... which works better than Pyridium or Azo. But none of them work that great...

[kingofpain]

Pyridium works very well for some and not at all for others for symptoms of IC.

Thanks for the responses...
I thought there was no way a person with IC wouldn't be helped by pyridium...
It numbs the mucosa, so it HAS to help in IC, is what I was thinking...
But since someone can have IC and NOT be helped by pyridium, like in my case, I could still have IC...
Is that about right?

[ICNDonna]

Yes, that's right. Pyridium doesn't always help.

Donna

[Dakota]

Yes, you are right. Pyridium did nothing for me and because we are all different you may respond to something else. I've used Prosed and sometimes get a little relief with it. However, it does not last long.

[born2swim]

Yes, pyridium type medications don't always help. Sorry to tell you that. IC is a really hard disease to treat. Some people get help with Elmiron, some don't. Some get help with hydrodistention, some don't. Some get help with Atarax/Vistiril, some don't. Some get help with the diet, some don't. Some get help with Neurontin/Lyrica type meds, some don't. Some get help with Topamax, some don't. Some get help with Interstim, some don't.

I think you get my point... it is so variable between patients. The cookie cutter approach to treating this disease does not work. Make sure you have a doctor that doesn't have a one track mind. Thinking outside the box got me on Soma and Lyrica and those 2 meds help... Lyrica has been a Godsend.

[BT2008]

Hey king,

So very sorry to hear of your diagnosis! I am not a physician, but (based upon my ongoing self-education of IC and the urinary tract system!) here is my take on your line of thinking:

First: Most definitely, you can have IC if pyridium doesn't work!!!

Second: The mucosa layer is the protective lining in your bladder that keeps toxic substances from coming in contact with the deeper layers of tissue and muscle that make up the structure of the bladder, ureters, and urethra.

When people take meds like pyridium, they help with the pain associated with inflammation of the mucosa. And, as long as the mucosa layer is still in-tact these drugs can work quite well.

But, when the mucosa layer is damaged, eroded, or otherwise compromised, the pyridium probably won't help much at all. In these cases, the toxins in your urine are seeping down into the deeper layers of the bladder and inflaming the exposed tissues and muscles--and more severe pain is the result.

If you are getting no relief from the pyridium then the mucosa layer of your bladder may be more severely damaged and therefore you will need another, stronger and more effective, solution for your pain. And there are a lot of other options in that case. You can learn of the many options here on this forum and then discuss them with your physician.

"IC" has a very broad inclusion range from mild to severe, and there are many 'notches' to be found in between! Most of us are in different stages with our IC, so what works for a lot of sufferers may not work at all for the rest of us!

IC is also a very unpredictable disease which makes it a very frustrating disease to have to live with! It is a life of trial and error, and even then you can be doing everything right and still be in pain!!

Again, I am sorry for your diagnosis; I wouldn't wish IC on anyone!! But you have come to the right place for some very good answers and support! Just make sure you have a good urologist who is willing to work with you in getting you into a much better place.

Take care,
~Beth

[Dakota]

BT2008

What an excellent post! You've given me some things to think about with that information. I've always wondered why even Proced did not give me the relief I was hoping for, and your take on things makes a lot of sense to me.

[born2swim]

Nicely said Beth! I wanted to add that IC pain can be due to nerve damage as well as just lining issues. For example, I have small breaks in the bladder lining. My cystoscope shows your typical IC pathology, but not as severe as others (and no ulcers). My nerves going to the bladder (or coming from the bladder) seem to be a big factor in my pain and urgency symptoms. Pyridium type medications don't touch that! My uro (the last one I had... whom I love!) said that the damage to the lining gets into the bladder wall and can cause injury to the nerves... which is harder to treat than just urine burning the gaps in the bladder lining. Make sense? That is why we are trying nerve blocks on me.

I still say that urodynamics is an important test. It helped us determine how/why my bladder acts the way it does.

[BT2008]

Hey Alyssa,

You are certainly correct in adding the "nerve" aspect to my description. If you want you can read that into my post by saying:

"The mucosa layer is the protective lining in your bladder that keeps toxic substances from coming in contact with the deeper layers of tissue, muscle, and connective nerves that make up the structure of the bladder, ureters, and urethra."

And...

"In these cases, the toxins in your urine are seeping down into the deeper layers of the bladder and inflaming the exposed tissues, muscles and connective nerves... "

My post is now better for it...thanks!

~Beth :)

[Dakota]

born2swim

How would you know if you have the nerve damage too? Would this explain why some of the more common treatments have not been helpful to me? I did not respond to Cystoprotek at all and I know so many others have found it helps them. In addition to that I've tried CystaQ, aloe vera, glucosamine, prosed, and Elavil which I can't take because it causes me to dry out so much. I am curious to know if the nerve blocks and Lyrica are working for you. What is the urodynamics test and how is it helpful in determining if you have nerve damage? I've often wondered about this because my IC developed after I had three kidney stone procedures and I'm always wondering if those procedures caused some damage and my IC.

[born2swim]

Hey Alyssa,

You are certainly correct in adding the "nerve" aspect to my description. If you want you can read that into my post by saying:

"The mucosa layer is the protective lining in your bladder that keeps toxic substances from coming in contact with the deeper layers of tissue, muscle, and connective nerves that make up the structure of the bladder, ureters, and urethra."

And...

"In these cases, the toxins in your urine are seeping down into the deeper layers of the bladder and inflaming the exposed tissues, muscles and connective nerves... "

My post is now better for it...thanks!

~Beth :)


I'm glad I could help! I find that I learn something new every time I log onto this site!

[born2swim]

born2swim

How would you know if you have the nerve damage too? Would this explain why some of the more common treatments have not been helpful to me? I did not respond to Cystoprotek at all and I know so many others have found it helps them. In addition to that I've tried CystaQ, aloe vera, glucosamine, prosed, and Elavil which I can't take because it causes me to dry out so much. I am curious to know if the nerve blocks and Lyrica are working for you. What is the urodynamics test and how is it helpful in determining if you have nerve damage? I've often wondered about this because my IC developed after I had three kidney stone procedures and I'm always wondering if those procedures caused some damage and my IC.


My urologist did the urodynamics study about a year ago. It measures how your bladder contracts, how the surrounding muscles contracts, etc. So, you have a probe in the rectum (I know, unpleasant) and it measures your normal currents. There are electrodes placed on your skin. They place a cath into the bladder and they fill it and when you say you have the urge, they measure that volume, measure the muscle activity, and compare it to your baseline muscle activity. For example, my bladder and pelvic muscles were already contracting and holding a long Charlie horse type spasm before the urge to go was severe… at only 50cc’s. They repeated the test a few times to get an average reading. My urologist got the results and said, “Woah” out loud in the hall. He said his first reaction was a bladder that is not communicating properly (either nerves talking to the bladder are off… or the bladder is giving the brain bad signals). I found that Cystoprotek hurt… as did aloe vera. Glucosamine and MSM didn’t do anything. Prosed and those bladder analgesics didn’t do much for me either (ultira-c helps a bit when I have urethral burning, which is not a common problem for me). Elavil gave me gastroparesis, so I couldn’t tolerate it… nor could I tolerate Tofranil (gave me suicidal thoughts). Lyrica has been a Godsend though (Neurontin did nothing). As soon as they started the Lyrica, things started to get better. Going to class improved. Traveling improved. Everything improved. The more active I am, the worse I feel though. I take Soma (a muscle relaxant) when I feel that spasm starting up (which usually happens when I walk too much). My IC symptoms started when I was running (training for a half-marathon). I thought it was a hip injury at first (pain was first). So I walked for exercise instead… then pain started with walking. I walked through the pain and then urgency/frequency came on and my IC has been present daily. I find that hydrodistentions help. Pain medication helps my urgency. The uro described it as the bladder saying “ouch ouch ouch” and the brain hearing it as “gotta go gotta go gotta go”.

I don’t know if any of this helps… feel free to ask questions though. I am going for nerve block #2 next week. I find that the first one helped my bladder capacity and the pain just a little bit. The doctor said it can take 2-3 to see improvement (so we’re keeping our fingers crossed). My symptoms are at their worst when I am active, and I am still very sedentary. I am hoping that will change with the blocks. I’d love to lift weights or swim or walk or do yoga or ANYTHING active again. I am a restless person and I miss all that activity!

[BT2008]

Hey Alyssa,

You wrote: The uro described it as the bladder saying “ouch ouch ouch” and the brain hearing it as “gotta go gotta go gotta go”.

Now, THAT's very interesting....I need to think on that ... and do some research on it, of course!! So, in other words, you are actually in pain when your brain thinks you have to go pee (even though you don't feel the pain as bad as it really is), which then makes sense that pain meds reduce your urgency/frequency, when it is actually reducing your pain. Hmph! How fascinating!

I too am sedentary as well, and I am very unhappy about that, but where you like to do "sporty" things, I actually prefer "brainy" things--you know, extreme mental exercise! So, I might not be able to clean my house the way I want to or go out and do things, but at least I can still do my "thinking" things! My heart goes out to you for not being able to do the things you love the most!

(((BIG HUG))),
~Beth

[born2swim]

Beth, I do enjoy brainy things too... so at least I have some sort of entertainment. I'm actually a medical student, so studying takes up most of my time anyways. I had to take a medical leave (not IC related) and I am so bored! What do I do when I am not studying, being active, traveling, etc. Sigh. I don't like to read, which would make my days better if I did. I do spend a lot of time doing medical stuff. I don't mind reading medical things :) (I guess I wouldnt' be a doctor if I didn't like it right?!). I am one of those people that fidgits, gets cabin fever, and loves to be out and about. IC has really hampered how I function. Now I feel like a wind up toy with no place to go! I hope things get better though. I have to have hope that it will get better! I take pain medication so I can function (go to my doctor appointments, run errands, clean my apartment, go to class, go out with friends, etc). I just don't want to take them anymore. Taking all these meds concern me.

Oh well... it was nice bouncing ideas off of you tonight! They are making progress in terms of how IC works, but they have a long way to go.

[BT2008]

Hey Alyssa,

I too depend upon my pain meds to make me functional, even on the most basic levels. And likewise, I am concerned about my physical dependence upon them, 24/7; but--until there is another alternative, I DO NOT ever want to live again in the kind of pain I suffered with/through before I started taking them! So, as long as I can, take them it is!

BTW: I do love to read ... voraciously so, if fact! But prior to getting on the right meds, my pain was so "all-consuming" I couldn't even make it through a simple novel and be able to know what I had read or who the characters were! Plus, it took several weeks just to finish one book! (Before IC, I could easily read 2-3 novels a week!)

Now that I can function as a viable human being again, I am very happy to report that I am able to read again, as well as study/research, write, and-->even laugh, play and have fun with my hubby again!:D So, even with all the risks that living with narcotics entails, these meds are giving me back my life!!!

It has been nice bouncing ideas off of you as well! Maybe as a medical student/physician you can learn more about IC and report it back to us!!! You know how much we would all appreciate it!

Maybe we both need to find a creative hobby ... like knitting or something!! I can hear the hyper-intensive, super-speedy clacking of your knitting needles now... LOL

Take care and good luck with all of your endeavors!

~Beth

[musiclover]

Dakota, I feel the same way. I have symptoms every single day and nothing seems to help. Aloe, cystoprotek, pyridium... so far, nothing has helped all too much. Maybe the aloe just a little bit. I think mine must be a nerve thing. I am not affected by foods much. What would I take for the nerve thing? I have Nortriptyline (like Elavil), but haven't taken it because I lost 15 pounds and don't want to gain it back!

[BT2008]

... I think mine must be a nerve thing. I am not affected by foods much. What would I take for the nerve thing? ...Hey Musiclover,

It is my understanding that Lyrica is the drug that works directly on the nerve endings. That is why it helps so much with those who have Fibromyalgia. Plus, quite a few people here have gotten a lot of relief from their IC with it.

So, you might want to ask your doc about it...

~Beth

[Glitter Girl]

Pyridium works for me most of the time but occasionally doesn't seem to help at all. Weird. Guess when it's at it's most worse is when Pyridium doesn't do much.