My bladder doesn't like pain meds I think

[ICLori]

Guys, I know you all must think I'm insane, I wonder myself even.

Here's been my experience with Elavil and other tricyclics and Atarax - they work for a few days, but each dose "hits" my bladder and irritates it so that eventually the irritation causes so much pain that it greatly overrides the ability of the medicine to block pain. With Atarax, I can handle the smallest dose once a day but when I try to take a "normal" size dose I get increased pain.

I'm starting to be afraid that the same thing is happening to me with Percocet, the bladder irritation.

It was working great when I only took it at night or every other night. Then the first day I was on it, it was great. Yesterday I started feeling more bladder pain (complicated by the fact that I took Neurontin which was a very strong irritant to my bladder) and today more bladder pain (again the Neurontin complicates it, so that I can't yet tell if it's the Neurontin messing me up or the Percocet.)

So I don't know if my bladder is hurting despite Percocet because of the Neurontin slowly working its way out and irritating me as it goes, or if the Percocet itself is behaving the same way with my bladder that the Elavil and Pamelor did. And Atarax. Giving with one hand and taking away with the other. Giving pain relief on the one hand but irritating my bladder more and more with each dose so that finally the irritation and pain override the pain relief.

I don't understand at all why my bladder is doing this. Again, I don't know for certain if it's the Percocet doing this, or the Neurontin going out of my system, since I know for a fact that Neurontin tore up my bladder since I could feel it hitting my bladder like a bomb each time I took it (and that was WITH percocet, I still felt so much pain!)

Maybe I'm panicking for no good reason, but if Percocet turns out like Elavil - helping at first, but if used regularly, causing me greater pain than ever - what will I do then? I guess Interstim and then just learn to live with the pain.

I'm just freaking out tonight because all this afternoon and tonight, my percocet hasn't been helping the pain at all. My urethra is just in so much pain it's throbbing and hurts so bad when I touch it. As if that whole system, bladder and urethra, is more inflammed than normal. So here I am with my nice dose of Percocet in my system, and I still can't sleep because my bladder hurts and I feel like I have to pee all the time.

If I did bladder removal, at least then I wouldn't have to worry about Elavil or Percocet inflamming my bladder further. Of course I would have other problems.

Today I got the phone number and address of a compounding pharmacy near where I live. I am going to ask my Army docs to write me a handwritten prescription (normally they use the computer system) so that I can buy out of pocket, some compounded Elavil that does not have any fillers or dyes. Well, they have to have some filler, but they will use a filler that doesn't bother people. That way, I can maybe see if it's the fillers/dyes that are killing my bladder with these meds, or the meds themselves. I really need to know that. I am hoping against hope that if I try Elavil that is compounded without dyes/fillers, it will help me instead of hurt me. I know I am grasping at straws at this point.

What a pickle to be in, huh? I'm so afraid to even post this because I know you all must think I'm insane or imagining things. I know of some people who are sensitive to one or two meds, but a whole long list like I've got??? And Percocet as well, apparently???? I'm taking Prelief with each dose, so it can't be the acid...?

I was so hoping that I could go on pain meds and live happily ever after. I guess if they let me try the patch, I would be free of the fillers and dyes, but the stuff would still go through my bladder as it's being broken down....but then I would know, if I got an inflammed bladder, that it was from the medicine itself and not the fillers. I just don't know of any pain medication that doesn't end up going through the bladder to be eliminated. And if my bladder is so hypsersensitive that it can't deal with any of the pain meds, not Elavil, not Percocet, not anything - then what?

I know it's my decision but I'm just feeling very frustrated and mad at my bladder and need to kind of vent. Oh gee and how am I going to break this to my pain doctor, when I was practically begging to be put on pain meds around the clock??? "Gee, Doc, my bladder doesn't like the pain meds, I have to stop, sorry..."

I think I have to try Interstim. Maybe Interstim would get me out of this mess, maybe the elimination of the urgency/frequency would be enough so that I wouldn't be so miserable with IC anymore. Maybe I could deal with the pain if only the urgency/frequency were taken out of the picture.

I feel like such a freak. I don't know of any other IC patient who has had this many stupid problems with the bladder reacting badly to so many medications.

I am going to continue on the Percocet at least a few more days in case it is just the Neurontin messing me up, within a few days I would imagine the Neurontin would be all gone I hope since I won't take it anymore...but if it IS the Percocet itself causing me increased bladder irritation and pain, what on earth do I do??? How insane is this for a pain med to actually stop working because it makes the bladder so much more irritated??

Thanks for letting me rant here a bit. Oh I hope this will never happen to any other IC'ers out there.

Blessings, Lori

[Mishka]

Hello,

I feel your pain! I am in the same situation with Percocet. I have a feeling it causes flares. It also doesn't work that well.

I've had 3 doctors, including my uro, say that Percocet is one of the least effective drugs for this type of pain. Unfortunately it's all I have right now, but in the future I'm going to push for another option. Could you do the same?

It is very frustrating to have it help and cause pain at the same time! Ugh.

Hope you feel better.

[ICLori]

Thank you so much, Mishka. I am going to see what else can be done.

I also just read a post in the 50 and over section of the message board, entitled something like "meds bothering bladder" can't remember exactly, but one lady who posted listed Percocet as one of the things that bothered her bladder.

I'm glad you don't think I'm insane, LOL! I think my pain docs will think I am insane, though.

Blessings, Lori

[Indy]

I have been taking 3 prelief with my nightime meds (I know you can't do that with neurontin). I think that helps.

[ICLori]

Hi, Indy, thank you, I have been taking two Prelief with each dose of Percocet but I can go up to three, for certain...

Blessings, Lori

[Mishka]

Hi again

He shouldn't think you are crazy. Just because one medicine doesn't work doesn't mean you don't need them. People often have to try numerous medications before finding one that works for them.

For me, Neurontin didn't work, Elavil turned me into a sobbing emotional wreck, anti inflammatories had no effect and on and on..I'm still trying to find a good pain management system. Percocet also makes me horribly nauseated, I have to take a Gravol with every dose and eat a lot or I will throw it all up.

If you are one 24/hr a day pain control, ask about time released meds or patches. Drugs like percocet, regular morphine etc are best for shert term acute pain. Long acting ones have less side effects.

Good luck!

[ICLori]

Thank you, Mishka. My problem with almost all of the meds used to treat IC or treat pain, is I get flares from them. Eventually they cause so much irritation with each repeated dose that I end up in constant bladder pain in spite of the pain relieving properties.

Last night was a good example of that - Percocet turned into my enemy, not my friend in the battle against bladder pain.

I don't even know if it is worth it to try the patch or something else - they will probably just bother my bladder too, like Percocet does.

One lady who reacted badly to percocet and many other meds, said she did well with Ultram.

I wish you good luck with trying other pain meds, hopefully they will not bother your bladder so much.

Blessings, Lori

[haylee86]

HI i was just wondering what meds or treatments everyone is on?

[haylee86]

i also was wondering if anyone on this site was from australia?

[Pain]

Lori, I think perhaps you need to slow down a bit and try to isolate the spikes in your bladder pain. I know you read a couple of people say that Percocet which is OXYCODONE seemed to irritate their bladders but in the research other than retention, most narcotics are not usual irritants. Neurontin can be though and again Neurontin was never approved for pain relief though used for it as they were thinking it would slow down the nerve impulses sent. They are now "rethinking" that in the medical community some now as the side effects of Neurontin can be quite intense. If anything, it might be the Tylenol in Percocet and, I would, as mentioned above, consider moving onto a long acting "pure" pain med if you are in 24/7 pain. There are many pain meds available to try. Since you posted that for the most part you were OK on Percocet..at least initially...I think if it was to irritate your bladder, it would have done so within the first six or so hours as it is excreted by then...from the first dose. It is perhaps a number of other factors spiking your pain and/or tolerance to the pain med itself. In order to see what works and what does not for pain, it is important to try and isolate the effect of each medication. You can only do that by introducing one at a time for a period of a week or two at least and the same with removing some from your daily regiman. Best of luck to you.

[haylee86]

also is anyone on the new steriod injections and if so how are you going with it?

[ICLori]

Hi, Pain, you are probably right, it might be the Neurontin causing this greatly increased pain and no relief from Percocet. Could a bad reaction to Neurontin cause this much pain? I guess it could...

I will stick with the Percocet for the time being. It could very well be the Tylenol causing my problems. I go back to the pain clinic on the...I think the 18th of August, for percutaneous nerve stimulation, I think I will ask about going on to methadone at that time. (They want to put me on Methadone for long-term relief.)

Blessings, Lori
P.S. The problem with me is, I'm seldom irritated by the first dose of any medicine. It was only after almost a week that I developed the irritation reaction to Elavil - worked great the first several days. Then I got less and less pain relief and more and more pain. Finally, it is to the point that even after I stopped it completely, if I would try it again, I got intense pain. Almost like an allergic reaction only antihistamines don't do a thing to ameliorate it. Neurontin is the only med I can think of that caused immediate pain....

[ICLori]

Would I have increased tolerance so soon in the game??? OH that is horrible. I don't want to escalate up to a huge dose and then have it stop working for me anyways...

Blessings, Lori

[ICLori]

Well, I went ahead and took a Percocet an hour ago or so, and so far so good, nice pain relief, no irritation. I will wait and see what happens in a few hours....

Maybe it was all just from the Neurontin, I mean if something really sets your bladder off, you could have pain for several days, right, even maybe a few days after you stop taking it? And maybe that's what is happening, maybe it's that the Percocet wasn't strong enough to overcome the bladder irritation.

I don't know, I'm so jumpy these days, so afraid. I've had so many disappointments before with meds - Elavil, Pamelor, higher doses of Atarax all seemed so promising at first then "turned" on me. I'm worried it will happen again with pain meds so when I see what I think are signs of it happening I worry. But maybe it was all just due to that stupid Neurontin messing up my stupid bladder. Grrrr. I wish I knew for certain...but I will just keep taking the Percocet for now. Anyway I can't just stop on my own because I am under a pain contract so I'd need their permission to stop.

Blessings, Lori

[Pain]

No one can answer your question(s) specifically without having all your info, etc. but my guess would be that a lot of these are not "irritants" but rather just not the proper/enough treatment for your pain and hence you are still feeling it spike through the medications. Please do NOT just cease taking any medications without first speaking to your doctor, Neurontin included unless it was just one or two doses. Depending on the doses, how long you were taking it, etc. it can be dangerous to just suddenly stop taking a particular medication.

I have taken 68 different medications along my 4 1/2 year ride and never once have I been pain free. I've been on heavy duty pain meds for most of that time and again, never once pain free. But I do think you need to try one thing at a time and introduce it, give your body a few weeks to adjust to the medication (unless the side effects are serious) and then see how you do. With pain meds it is often necessary to titrate up to the appropriate dose to control your pain and/or with long term pain meds, also introduce a short acting one for break thru pain which is the regime most are put on.

I'm not saying all of these are not irritating your bladder but research doesn't seem to indicate that most of these are or can be bladder irritants. Each person is different for sure but it would be my guess that your bladder is just spiking in pain due to your disease more so than these particular meds. But the only way to tell that is to isolate the effect of each one. Even the inert additives in most narcotic pain meds are not "known" irritants to the bladder. By pain meds I mean opiate/opioids. That class does not include Elavil, Neurontin, etc.

An interesting note re: meds. Pyridium or Pyridium Plus always helped my pain back when I had just plain old infections or even flares which were simply due to sexual activity, etc. back in my 20's. Pyridium does absolutely nothing for the 24/7 pain I have now. Nothing at all. Which is fine by me because orange pee is not something I cherished. So my theory to my doctors is that the nerves sending the pain are far beneath the surface of the bladder which is where pyridium "numbs" as it goes through. Some take it over long periods. At one time there was much concern over potential kidney damage at doing so and it is NOT approved or should I say recommended for long term use though some here take it. Anyway...not sure if you're taken P Plus but it might be something to try and see if it helps the extra bad times. For me it does nothing because my pain must be coming from deeper within the walls of the bladder but for others it does help some.

Please be very careful making any changes to your medications without your doctors OK and supervision. Be especially careful with Neurontin and narcotic pain meds. These are not drugs to just start and stop abuptly. Speaking of Neurontin, just saw there is a class action suit now being launched against it/the medical community for it being prescribed for non approved uses and causing side effects and even worse.

There are many drugs today that are prescribed outside of their approved use but sometimes that can come back to haunt the manufacturer, the doctors and/or the patients. It never did anything for my pain but boy oh boy did it screw with my system overall...I was like a walking drunk with a short circuited brain LOL. And when you think about it, it was developed for SEIZURE disorders so indeed it affects the brain waves and nerve impulses throughout the body. Some take it successfully but as I say with all medications, always be your own best advocate. DO NOT go by what others tell you to do. Do your own research, be thorough and then work with your physicians and pharmacists. Pharmacists can often times be very helpful to discuss specific meds with...never should take the place of docs but can be helpful nonetheless.

I agree it is scary to increase doses of pain meds. With some, such as Oxycontin, there is no "ceiling" meaning that if need be, a doctor can keep increasing the dosage of a particular patient as necessary due to tolerance with no "max" they must stop it before "damage occurs". This info based on their clinical trials. But it is scary in that you are at the mercy of the medical industry and at any time they/DEA can decide...OK..you have to stop these medications now. That has always scared me...because withdrawal is not fun for anyone. Dependence is NOT the same as addiction but so many doctors because of the media just don't "get that". I know people who must take doses of narcotic pain meds so high they would kill an opiate naive patient but because they have taken them so long, their tolerance levels make it necessary. I have resisted up'ing my doses now but am suffering for it with almost back to square one pain as if I'm not taking ANY medications even though I am due to tolerance. Sad thing is for me, the SIDE EFFECTS NEVER GO AWAY..even after years and building up tolerance. So I'm "just lucky" that way I guess.

Best of luck!