I found this site a few weeks ago, and started a thread on here aout chronic kidney stones and pain. After that,I realized there was a kidney disorder section where I now do my posting. Anyway my original post was about how unfair the doctors and ER people treat me about my condition. I have chronic kidney stones(5-7 a month) I also have tmj and endometriosis
and a few other things that cause discomfort. I can live with all of it, except the kidney stone pain and the awful painful infections I get with it. Of course I was never given hardly any meds for my pain (12-30 vico's for 1 month, and only 1 month) I was always given like 5mg with 500 mg of tylenol and told to take 1-2 a day lol. I never knew until recentlyafter all these years of stones, that they make oxycodone without tylenol and a ml. higher than 7.5. Anyway after all these years of being treated realy badly, I ordered all my cat scan reports and went and saw my first PM Dr. He sat with me for one hour and read my scans and was realy shocked that the only treatment I received was a cat scan every 2 weeks(to many dangerous scans if you ask me). NO OTHER TESTS!!! My urologist never even told me that I had cysts on my kidneys, that I had piles of stones in my kidneys and a whole bunch of other stuff. He would just say oh you have a stone in your ureter and it will pass soon. He refused to give pain meds to me, even knowing that I had piles of stones that were going to keep coming down, and seeing them all on the scans and seeing that I had a 5 ml stone in the ureter AND told me that the bladder infections I kept getting were not painful at all. So all I got was cat scans and antibiotics. Every catscan showed a new and differnt size stone in the ureter, still no pain meds. So I went to the Pm Dr. and finaly found my advocate. He said get rid of my urologist and get another one. He has been truly wonderful. He put me on oxycodone and methadone (which I thought was just used for heroin stuff) Anyway I am so much better now, and wow the methadone has almost no side effects. It doest even make me feel all loopy.Question is when the stone is in the ureter moving down and cutting me, that is the worst pain I have, its like a 10, I also vommit realy bad.I dont want to take any higher dosage than what I am on now, but what is best to take at home, in conjunction with the other two med's that would be equal to the hospital meds?? I would only need that type of med every now and then and not every day. Just when the stone is cutting and moving down. Do they have injectables for home use? What is the norm for pm Dr to give for that? I dont see him again for a month, so was curious. So sorry about long message and hope this makes sense. Thanks for any replys
dilaudid would be a very good optionbut your doc might have some problems in rxing it to you unless you two could come up with some very strict guidelines in its use.but this ,in my opinion after having it in the hospital many times for many different reasons,would really be the most effective type of pain med for that sudden increase in the pain you get with the stones when they start to move.I have only had one stone in my life and that was bad enough i cannot even imagine going thru that over and over like you have.wow.
just wondering about the 'cysts' this doc found on or in? your kidneys.did he Dx this as any actual kidney disease at all/perhaps polycystic kidney disease?this is what I have.didn't know it til after my son found out he had it and I had to be tested for it as it is an autosomal dominant condition that means that one parent has to have it in order to actually be able to pass it on to their children(the kids run a 50/50 chance of aquireing it)Have you ever has an ultrasound done on your kidneys and your liver?these really show up well(the poly globs of cysts)upon US.this can also affect the liver as well.it got mine too as well as my son,but he also recieved a mutated form which caused him to go into liver failure and the need for a liver transplant.as of last week,he has had this new miracle liver for exactly 7 wonderful years now.if you shpuld happen to actually have PKD,make sure they check your liver too.
I would really discuss the possibility of the dilaudid for that breakthru type of pain you are having,i really do think this would be very helpful for that level of pain.hope this doc will see the need and do this or you.Please let us know just how you are doing with this.good luck,Marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Hi M&M, I went through a period where I passed about 30 stones in 6 months, Fortunately they were just calcium stones and after alot of testing we found tha absorption problem and Potassium citrate helped preventing further stones.
I would think the meth would be for the constant pain you eperience and the short acting med, Oxy, in this case would be your BT "Break Through" med to use when the stone is actually moving or stuck right before it drops into the bladder. People often make the msistake of using their BT meds daily because they are prescribed that way. Say he gave you 60 or 90 oxycodone tabs. With orders to take one every 4-6 hours as needed for BT pain. Even though you could take more than 60 or 90 in a month taking them exactly as prescribed, they are still considered a one month supply and meant to be used for large increases in pain rather than part of your daily regemin. They wouldn't last a week if you took them every 4 hours whether you needed it or not. Even if you stuck to the 2 or 3 a day to make them last, those 2 or 3 that were prescribed for BT pain were meant to manage severe pain the meth isn't.
If the meth manages your pain and you just take the oxy because your allowed, they become part of your daily regemin and when you have true BT pain, like when a stone is passing down the ureter, the oxy won't be any more effective than every other day you took it. If the BT med isn't strong enough for that pain certainly talk about that with your doc but you aren't going to be able to mask a stone and if your the pain is so terrible this huge increase in meds isn't working, you have to consider the posibility the kidney has become obstructed.
If you take the oxy just to increase the effectiveness so you have max benefit every day, you don't have the means to manage BT pain. All you can do is take the same meds you took every day when a stone wasn't moving. As far as one med being stronger or more like hospital meds. If I had my choice between 4 mgs of dilaudid or 30 mgs of Roxicodone I would take the Roxi for extreme pain. Oral dilaudid isn't anywhere near as effective when taken orally, same with morphine. Having multiple strength BT meds is kind of odd.
My doc prescribes 30 mg oxycodone tabs up to 2 at a time. But I can probably count how many times I have actually taken 60 mgs using my fingers. If I feel I need 15 mgs I break one in half, if that doesn't do it I take the other half. I may take one pill for severe pain, and when it's so bad you can't catch your breath I take 2. I figure if I take the max amount every time I have an increase in pain, what am I gong to do when things get really bad. So I try to hold off from taking the max dose unless I'm in max pain. You know your max pain is when the stone is moving, save your BT for only then and it's more likely to be effective. Particluarly when you have managed all this time with virtually nothing.
It's not the PM docs to prevent you from ever feeling pain. You do have to except that it's going to hurt and fortunately you have a doc helping you manage it with meds stronger than you have ever taken. Meth is no joke, It's 5-10 times more potent than morphine, even oxy is more potent than morphine when you compare it mg to mg.
You do have to realize that they can't give you enough meds to to mask a stone passing and keep you that drugged. If your that drugged you wouldn't feel when a kidney became obstructed and taking high dose, potent meds you don't have the tolerance to can be dangerous in someone not used to it. I doubt anyone is ready to give you injectable morphine. Not that that would mask a stone completely without taking enough to be sedated.
A 5mm stone is large enough to block a ureter comletely and you kidney fills with urine it can't dump. If you had strong enough meds to mask the worst of passing a stone you might also mask the pain while your kidney shuts down.
If the meds relieve 50% of the pain, the meds are dong their job. But when it comes to BT meds, if you use them daily, they won't be effective when you need them. Going from virtually nothing, I would imagine your getting considerable relief other than when a stone is actually on the move. IT's one of those questions as to when is enough pain relief enough. Taking BT meds every day may take you base level of pain down a level or two, but asking to stay painfree and then having something even stronger for when it gets bad, isn't realistic.
You do have to accept some amount of pain. There will be times when you just can't do more than make it tolerable. If your expecting a stronger BT med to drop you down to where you are on your best day while a stone is moving, you not being realistic and could mask a potenially life threatening problem or create one. How many shots of morphine would be enough?
If you have ever had an obstructed kidney and had to have a stone cyctoscopically removed, you will be able to recognize the difference in a moving stone and an obstructed kidney that bloats under your ribs and
keeps you from catching your breath. You don't want to mask that, you want a good urologist that can remove an obstructed stone without tearing you up to much before you damage the kidney even further.
So you have to feel some pain. You pretty much went to from nothing to round the clock pain meds stronger than anything you have ever taken plus break through meds stronger than anything your other docs would give. WE all have to find a middle ground between pain control and not excepting anything less than absolute relief now that you found a doc willing to treat your pain and know their are even stronger meds available.
I'm just trying to prevent an ungly confrontation with the first doc willing to work with you if you comlain your only getting 80% relief. IF your getting better than 50% most of the time, your doing better than most and a whole lot better than people just 10 years ago when the strongest thing any doc would give you was 5mg percocet. 50% reief is what they shoot for with implantable morphine pumps for intractablle pain.
Just be careful how you apraoch it. Maybe he can adjust your Short Acting "BT" med "oxycodone" to where you have something strong enough to take 1 if it's not too bad or 2 if it is, Or a half a Tab and then a whole. OxyCodone comes in 5,7.5, 10, 15 and 30 mg tabs. Asking to mask a moving stone is like asking to be able to stick your hand in a fire, it's not reasonable and you would stay wacked trying to do it.
2 different BT meds is kind of strange on top of meth for someone brand new to PM. It may also seem your expectations are too high considering where you were and where you are now.
It's not like you have been taking Percocet for years and have become tolerant. Your hoping more will just work better than the meth and amount of oxy your taking now. Being painfree while passing a stone isn't possible or something they shoot for.
Using your oxy only when you're passing a stone is likely why he prescribed it, not to just take everyday whether a stone is moving or not. If you take excessive meds when you don't need them, trying to obtain an unrealistic level of pain relief, the meds won't even take the edge off when you do need them. Not to mention discontinuing methadone is no walk in the park. Have you tried lithotripsy, what type of stones do you pass, calcium or uric acid.
Although Urologist' generally treat stones and do the surgery to remove obstructed stones, a Nephrologist is a kidney doc who is more qualified to DX the problem that's creating the stones. My urologist removed a half dozen stones with a cystoscope and placed stents every time, but it was the nephrologist that did the metabolic work up and other testing that lead to prevention rather than simply treating each stone as it passed.
First off shoreline,I would liketo say WOW, and thanks 4 the info. I am so thankfull for your reply and other's comments and finding this site! I understand the BT oxycodone thing now. He gave me the meth for the TMJ, cysts and fibroids and endometriosis. I have constant trouble with all of these, and told him I can live with them, with only small amounts of med's, for I dont want to feel loopy all the time. I can still have a life with these problems. But the stones, I can not handle anymore. I am sick of them, and I have had it. I know people have worse and more painful conditions and I should feel lucky, but the stones realy tick me off. I understand now about the BT med. I guess when I have the severe pain I should take the oxy and possibly a half of another pill. Which would equal like 23 mg. One pill is 15 mg. Until I found this site, I realy didnt know alot about pain med's. There are pain med's on here I have never heard of. I dont ever want to get to the point where I have to up a dose, because my body gets used to them. I am realy happy that I can take a low dose of the meth and it helps 100 % with the smaller conditions. I take a half of a 5mg pill 3 times a day. I am impressed with the meth, for I have no any side effects. I always thought meth was for heroin only. I do have to always take Phenergran when I take the oxy though, which then makes me sleepy, which I hate. But it's better than being in pain. I have a Hysterectomy in 3 months which will clear alot of this up. God I cant wait for that. I wont have to do the meth anymore after that. As for the stones, I have my first kidney Dr now, and a new urologist. . Yes I have also had a lithotripsy. Many. They are all Calcium. I have bad scars in the ureter and they want me to have stints all the time, which are so painful I want to kill people. I hope that the new kidney Dr will give me tests for thyroid and all the other tests I should have been having, which I am realy excited about. I just want my old life back. I am an active person and love to be out and about and exercise. I used to hate people who complained and talked about their pain, and I always rolled my eyes and never believed them, or thought they were trying to have a pity party. HA now here I am. Anyway I was just mainly asking if there was something you could take that would quickly get into your system when the stone was in the ureter, not if I could take 3 different med's. The pain is so weird, you cant get away from it and cant get into a comfortable position AND THE BIG THING, when the big pain hits, its hard to take a pill and wait for it to kick in, AND I get so violently nauseas, and cold sweat that I almost always throw up.Then the pain med comes up with it. So thats why I was asking about the quick med. Over all I am 100 % happy with this new Dr. and the med's and everything that has happened in the last 3 weeks. Thanks so much for letting me carry on, and thanks so much for all that info. It took alot of time to write all that, thank you ,thank you ,thank you