Learning to manage my interstitial cystitis: Phenazopyridine (Azo)

OmiOMy

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Very recently, I received my diagnosis of interstitial cystitis. While we're waiting for the next move, we're trying to get my pain into a manageable situation, and that includes a three times daily dose of maximum strength Azo.

I was skeptical at first, but it seriously is working. I don't dread having to go to the bathroom now, like I did before. And it takes the rest of the pain from a "roll around on the floor and cry" level to a "well this is only moderately irritating" level.

There are a few things, though: this stuff turns your pee the color of orange soda, as a first warning. Do Not Panic. Then there is the second thing — that first pee after taking this stuff makes things go straight up numb. It's become a thing I look forward to now, but it was unexpected the first couple times.

Then there was the second thing: unless I'm mistaken, or if it's just me, but it seems like I'm having a harder time holding while I'm on it? I notice I'm leaking more on it. Is that a common thing, or am I needing to call my doctor on Monday?

Who else has tried that stuff? Any tips or things I should know? What else can I do?
 

HereWeGo2169

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Hello. I have taken AZO ( which is over the counter) and prescription strength pyridium for burning while urinating and/or passing kidney stones. Yes, this does coat your kidneys and bladder and comes out red/deep dark color. My urologist advised me not to take for long term as this can affect kidney and bladder. IMO, I wouldn't want to take AZO/pyridium long term without medical guidance as you have mentioned, you can not feel anything. IMO, the body senses pain for a reason, letting you know there is something wrong. Pain when you pee? UTI, kidney stones, etc. I have noticed that my UINT is more significant when I'm on pyridium. I would definitely consult with a urologist. Hope this helps & feel better.
 

ltaluv

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I've used it many times for relief of interstitial cystitis pain, and I've found it to be very helpful.

It has to be used with caution, as it can cause kidney damage when used for long periods or at high doses. That doesn't mean that it can't be used for longer times, but regular kidney tests would be wise.

I have noticed more leakage when I'm on it, but I've wondered if I'm really leaking more, or if it's just that much more noticeable because of the bright orange color. I end up with all the skin in my diaper area stained orange.
 

OmiOMy

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HereWeGo2169 said:
Hello. I have taken AZO ( which is over the counter) and prescription strength pyridium for burning while urinating and/or passing kidney stones. Yes, this does coat your kidneys and bladder and comes out red/deep dark color. My urologist advised me not to take for long term as this can affect kidney and bladder. IMO, I wouldn't want to take AZO/pyridium long term without medical guidance as you have mentioned, you can not feel anything. IMO, the body senses pain for a reason, letting you know there is something wrong. Pain when you pee? UTI, kidney stones, etc. I have noticed that my UINT is more significant when I'm on pyridium. I would definitely consult with a urologist. Hope this helps & feel better.
I've actually seen the doctor, a gynecourologist, and am taking this on his recommendation. He suggested it because I've been dealing with this pain for... six months now, yikes. He suggested it because apparently if it works, the treatment that he developed for IC will work on me. And thank fuck for that, because frankly it was getting so bad I was starting to want to eat a gun.

I'm actually to call him today, thanks for the reminder!
 

OmiOMy

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Some observations as I run low:

- OAB without associated pain is a trip: if normal is 0 to 60 then this is 0 to 100, barely time to get to the bathroom

- My day control isn't as bad as I thought it was, generally speaking — I can see it in the amount of orange in things. It isn't zero, but it's not as bad as I thought.

- I have a lot of false alarm "leaky" sensations, probably because of the fibro. But I can't ignore them because there HAVE been actual leaks.

- With the pain managed down there, my body has decided to dust off the ol' sex drive and I am conflicted about it. Literally sending myself to horny jail to deal with it because it CANNOT be ignored. Feh. I could have been doing something productive *mumble mutter*

Now, sleep before I out muscle the meds...
 

Diaperman95

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Just be sure he is monitoring your blood work and kidney function if you plan on staying on it 24/7. It can also cause some stomach issues. I have taken a lot in my life like 1000's for my IC or infections but only when it is super flared up. There is a prescription that I use to get that worked 10 times better. It helps more with the spasms than AZO's and not just the burning, it is called Urogesic-blue and your pee is a blue green color and makes the toilet water look like it has a blue cleaning tablet in the water. I use to use it a lot 20 years ago and even tried to get some recently. My doctor wrote a script but the pharmacy told me my insurance and most others refuse to pay for it and no longer consider it to be a medicine but more a elective supplement. Yeah I called my insurance and argued for a hour an it did no good they call elective even though the doctor writes a script. It use to be available in a couple generics and then they discontinued it all together and now only one company is making it again but it is expensive if your insurance will not cover it. Like 300for 30 pills and you need it 3 times a day. Man it worked good though. They use to refer to it as the blue bomb because what it did to your pee.

I have never noticed AZO's making me numb out side of numbing the pin bit but only in the urinary tract not like my man hood. I also never noticed it to make it easier to leak. If anything it reduced my accidents. But if you are talking about seeing small leaks and stains on your underwear than you most likely always had them and the stain it makes has it standing out.. It does not wash out of anything it touches so keep that in mind and if you don't have to wear a diaper or pull up at least use a light pad to catch the after dribble and small leaks and save your underwear and clothes. Get you a water tight pill container for your key chain and do not leave the packs in your pocket. I know they are sealed in a plastic but I promise you it only takes being in the rain once or sweating badly for them to ruin you cloths. That or god forbid your wife washes all of your jeans with 6 or 8 tablets in the pocket.... Yeah I had that happen and it ruined everything in the wash.

I have had IC officially from age 19... like 28 years but I am certain I have had it since middle school and even grade school. I use to have doctors notes on file at the school that said I could be excused anytime I needed for the restroom. I really have learned to live with it and I don't take much for it anymore in the way of meds because the side effect suck and the meds just did not work. I have been in chronic pain management for other reasons and the pain meds and musical relaxers help some with the spasms. Also Dollar General has generic AZO's for a lot less that work just as good. So do most all large pharmacies so you do not have to go name brand! Best wishes my friend..

There are a few of us fellow IC members here.
 
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ltaluv

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Diaperman95 said:
Just be sure he is monitoring your blood work and kidney function if you plan on staying on it 24/7. It can also cause some stomach issues. I have taken a lot in my life like 1000's for my IC or infections but only when it is super flared up. There is a prescription that I use to get that worked 10 times better. It helps more with the spasms than AZO's and not just the burning, it is called Urogesic-blue and your pee is a blue green color and makes the toilet water look like it has a blue cleaning tablet in the water. I use to use it a lot 20 years ago and even tried to get some recently. My doctor wrote a script but the pharmacy told me my insurance and most others refuse to pay for it and no longer consider it to be a medicine but more a elective supplement. Yeah I called my insurance and argued for a hour an it did no good they call elective even though the doctor writes a script. It use to be available in a couple generics and then they discontinued it all together and now only one company is making it again but it is expensive if your insurance will not cover it. Like 300for 30 pills and you need it 3 times a day. Man it worked good though. They use to refer to it as the blue bomb because what it did to your pee.
My urologist recently prescribed something called Uro-MP that contains methylene blue along with some other ingredients. Like you, my insurance wouldn't cover it, and it would have been $160 or of pocket, so I didn't end up getting it. It's apparently an MAO inhibitor, which can have some major drug interactions, so I want sure I wanted to go there.
 
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Diaperman95

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ltaluv said:
My urologist recently prescribed something called Uro-MP that contains methylene blue along with some other ingredients. Like you, my insurance wouldn't cover it, and it would have been $160 or of pocket, so I didn't end up getting it. It's apparently an MAO inhibitor, which can have some major drug interactions, so I want sure I wanted to go there.
I just Know that stuff helped with the spasm's more than anything. It is too bad. I have no doubt it most likely was no good for me. Lol every me made has more side effects than the problem they are treating. But When I looked it up it said the FDA says "Disclaimer: This drug has not been found by FDA to be safe and effective, and this labeling has not been approved by FDA." But Pyridium says the same thing and my pharmacist told me insurance companies no longer pay for it either. But it is pretty much the same as AZO's So I guess AZO's is the best we got unless you are willing to pay the BS. I meant to look it up on the Canadian pharmacy. You can save a lot of money shopping there on many drugs. But it Not being FDA approved most likely knocks out buying from them too.
 

OmiOMy

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ltaluv said:
My urologist recently prescribed something called Uro-MP that contains methylene blue along with some other ingredients. Like you, my insurance wouldn't cover it, and it would have been $160 or of pocket, so I didn't end up getting it. It's apparently an MAO inhibitor, which can have some major drug interactions, so I want sure I wanted to go there.
Ooh, I was gonna look into this but I think like ¾'s of my meds interact with MAOIs. I'll check later 😅
 
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