Hi all...I have been one of those lurkers for a long time and finally decided to sign up when I needed to ask a few questions of my own. Since this is my first post, please bare with me while I explain my situation.
I first started having pains in my left leg in 2004. Took almost 1-1/2 years before someone could actually diagnosis it to the point of doing something about it. I had a lumbar lamenectomy at L5-S1 in July 2005 for herniated disc.
I was back to work in 3-1/2 weeks. My job is an office position. A few months later, I started having burning in my left foot and up the backside of my leg up into my rearend. I went through shots at local Pain Management for about a year. That place was a joke. The doc all the way down to the staff were very rude. Finally in January 2007, I started having problems in my right foot as well. I called my surgeon and he told me to come in immediately. He and his staff are very good and treated me with respect. Once test were done, he still didn't want to do another surgery before going through the Pain Management of his recommendation. This doc is in a neighboring large city known for medical. I will say this right now, he and his nurses have been great and have treated me well. I have read many stories of people having different stories relating to that. I have been through every procedure he has recommended. He has been very aggressive in trying to provide me with pain relief. Two weeks ago, I just had 8 RFL's. 4 on each side. I have never really gotten any relief from any of them if any at all.
My question is medicine related, but please feel free to offer any advice regarding any part. Below is a list of medications I have been on and the effects of each:
1) Norco...from surgeon. Worked well before and after surgery.
2) Recently was changed to Duragesic patch for 3 weeks by PM doc...had to stop wearing them due to skin reactions. I would get blisters around the perifry of the patch. It actually worked pretty good, but could not deal with the blisters. I was to take 4 Norco a day for BT while on patch. Usual dose was 2 Norco 10/325 every 6 hours.
3) PM doc put me on Roxicodone...never taken oxy before. It worked pretty good for about a week. I found in week 2 I was having to take two at a time to get any relief. I developed a severe problem urinating also.
4) I am now back on the Norco until my next appointment in three more days.
I guess my question is going to regard tolerance, but as said, please advise in any area you feel or ask any question you want. The Norco worked good for almost 3 years including before and after surgery. It seems all of a sudden that my tolerance has topped out for some reason.
Is this typical or is something not right???
Please read this before answering. I've also kidney stones since I was 21 years old and I am now working on 42. I had another stone this past Tuesday and it is now Sunday (Easter). They used to give me Demerol and phenerganin my IV and it worked very well. I would urinate pure blood and not even know it. In the last year or so, they started using Dilaudid in IV and it also worked well. Normally these meds knock me on my rear and I don't know anything. I have stones about every 6 months. I actually lost my left kidney (atrophy) due to stones. Last Tuesday when a coworker took me to the ER, they done the usual routine with fluids and Dilaudid. They had to give me 3 shots before I got any relief. Like I said, normally that would knock me down, but it barely affected me. Usually I would feel the effects of the medicine for hours, but this time, I felt like I could hop in my truck and drive like nothing hapened. I didn't, I was just using as comparison. So, now back to my point, all of a sudden, nothing seems to help very much. The Norco doesn't do a thing for me. Neither does the oxy and now the Dilaudid. Let me say this, I am not speaking of euphoria or high, just from point of pain relief. I finally passed one stone on Tuesday after the third shot and thought I was going to pass out from the pain. I passed another that night at home.
So, what is going on with my tolerance? I actually thought about asking the doc id he could test the Norco to see if they were placebo or something. I know it sounds crazy, but it is that bad. I have always gotten them from the same pharm and they look the same.
I go back to PM doc this coming Tuesday for follow up on RFL's.
Anyone have any ideas or advice whether it be a medicine to try or what is causing the sudden high tolerance? Thing is, I know my doses are fairly high, but I have read where some are on stronger meds for longer. He did mention Methadone, but after reading up on it, I think I want to stay away from that because I do have hopes of one day getting this cured and not needing meds anymore and the Methadone is said to be very hard to come off of.
Thanks to all who have had the patience to read the entire post...
You've come to the right place for compassionate support and info.
What you're experiencing is totally normal, and it is as you guessed - tolerance.
I happen to agree w/the doc that methadone may be just the right thing. And it has a special quality that kinda halts tolerance. Getting off of it is like with other opioids, go slow and taper. I was switched from meth to morphine and was real worried about withdrawal, but had none. So now, if I go off narcotics it won't be from meth. I recommend this process for others when it's time to stop opioids and one is on meth - switch to morphine first for awhile, then taper down.
FWIW, I found meth to be the best pain med I've ever used. You seem like a perfect candidate.
Hello and welcome! Many people here have a wide array of experiences, so hopefully, you can get some good support.
Yes, tolerance is the issue. You don't give any overall time frames...A better timeline would be more helpful.
My guess is that the patch probably contributed to your tolerance quite a bit due to it's overall strength. It's a good product though, and you found out yourself that it works well. I know what you mean about the itching and soreness....I like the "effects" of the patch, but not the patch concept itself. One of the reasons it works so well is that it delivers a very precise amt of med each hour of the day.
After you've been on Fentanyl and Oxycodone, Hydrocodone (Norco) probably won't work very well as your primary med. So, this is probably your problem. However, your story of having it tested says volumes about how little it's working...I'd tell your Doc that....It really hits home.
I think it's clear that you need some type of long acting (LA) med to "stabilize" you....Meds in your system 24/7, and then something else for BT. There are only so many choices for LA...And, you've eliminated one of them (patch). I'd recommend Oxycontin, 2 or 3 times a day since the active ingredient, Oxycodone, worked well for you. Then, you could take something else for BT through....Maybe even the the Norco...Or a short acting Oxycodone product. Norco as a supplement may work for you, but probably not as the primary med. The key to the LA med is to build up your blood plasma level (BPL)....This knocks out most, maybe all, of the little pain and also "levels you out" and avoids the "ups and downs" of pain meds. Then, the BT meds address the "flare ups" that inevitably happen.
As far as your urination problem, that's a side effect of pain meds in general....The stronger the med, the more likely you'll have it. If you've been lurking for a while, you may have seen one of my posts somewhere that addresses the cost / benefit ratio of taking pain meds. Do the "costs" outweigh the "benefits" or do the "benefits" outweigh the "costs"? This urination issue is one of the "costs." I think you will adjust....Especially if you drink lots of water. You should also be aware of constipation, which can be handled with Metamucil. Works wonders for me...It's natural, husk fiber. Don't take any stimulants. One way to help the urination issue is to turn on your faucet or hold your finger under cold water....Works for me!!
You would just have to understand the place I work. It is family owned and Christian operated. They have been ok with the lighter stuff, but I just don't know about the methadone.
If they are true Christians, then they "shall not judge".........
Regardless, I wouldn't tell them, or anyone else for that matter, any more than absolutely necessary. As I'm sure many will attest to, PM is one of the most misunderstood areas of medicine as well as wrongfully judged. At my PM clinic, I had to sign a contract that addressed all sorts of issues (drug testing, driving, & etc.) and in it, there was a section that instructed me to not tell anyone except my spouse about my treatment. One of the main reasons is so no one will be tempted to steal your meds. People just don't need to know.
I know Methadone works well for many people, but at this point there are so many other alternatives for you, especially since you are a new patient. I wouldn't go there either until I tried some other things. It's a very long acting med and really builds up in your system.
Since your Doc has issues with you researching on the internet, you may have to get creative in how you suggest things...Instead of saying "I saw on-line that Oxycontin works well...Can I try it"......Say, "the roxicodone seemed to work really well for me...Is there a long acting me that does the same thing"? You can also bring things up by saying, I saw or read where.......and leave the words "on-line" and "internet" out.
Last edited by Executor; 03-23-2008 at 07:09 PM.
I know that there are several LA(long acting) medications that could be used besides the fentanyl patch. There are several different forms of morphine including Avinza, Kadian, and MS Contin. There is also Opana(oxymorphone) which is a pretty powerful long LA med. There is Oxycontin(oxycodone) as well although doctors sometimes are hesitant to prescribe it. And then there is Methadone which you seem to be a little hesitant about trying. I try to think of it as just another drug that is used for pain management, which it is. I think of it as merely a prescription pain medication and yes it has a dual purpose for treating heroin addicts. You might want to print this thread out for reference so you can ask your doctor about them. I believe the Avinza is a once daily form of morphine which makes it nice to not have to take too many pills although the other medications are taken 2-3 times per day. Hopefully the PM doc can get your pain under control. There are always options so don't be scared that it can not be treated. I am 34 years old and currently on the fentanyl patch with Percocet for my Bt med. I was also very scared that once I started on a strong LA med that my tolerance would sky rocket and what would I use say 20 years from now. However, the many people on this board who are knowledgable have calmed my fears, or at least some of them Please keep us posted on how things go with the appt and what meds you are switched too.
p.s. You really do not need to be sharing what medication you take. You never know who is interested in taking your meds or who may be a drug addict. Trust me, sometimes you have no idea who is an addict.
I don't think he really cares that I am researching things. He just don't want me reading all the "bad" stuff without understanding the "good" points as well. One thing I have not done is ask for a specific medicine. I have always let him make the suggestions, then I ask him information about that medication.
I agree about not letting people know about what I am taking. Only a few closest friends know, but still don't know what I am taking. They just know that I am taking something. Even then, I down play it saying I only get like 30 for that month or something like that. I didn't do it for security purposes though. I told them that because of the stigma. People without chronic pain just don't understand. I am glad someone out there does.
I am definately not seeking drugs and I am sure you guys don't think that. I would much rahter be without them and pain free so I could get back to riding my dirtbikes and karate. It is surely life changing.
I may be released soon by him for surgical evaluation. I had one in 2005 and sure don't look forward to another.
I will let you all know how the appointment goes. Thanks for all of your help.
Hi Pain2004: Welcome! I just wanted to put in a good word for Oxycontin, as it has worked vey well for me. I've been taking it for about 4 years now and have recently had my first change in dosage. It had been helping me way more than the short-acting meds I had been taking before. I had been taking it 2x/day and was still having a good bit of breakthrough pain. My Pain doc had wanted to up the Oxy for about a year, but I didn't fully comprehend the way it all really worked and just told him I thought I needed more BT meds (Vicodin), so he upped that from 5/500 to 7.5/500. It helped a little, but not as much as I had hoped.
So, about 4 months ago, I finally let him add another dose per day and what a difference. He told me the drug companies swear that it lasts 12 hours, but he's rarely had a patient have it work for more than 8. He was absolutely right and I have even been able to go down 1 BT a day. At next visit, he wants to up the mgs. from 20mg. to 30 mg., and see if I can go down even more on the BT. I'm totally on board with that.
I was so concerned with the stigma attached to Oxycontin that it kept me from getting the best relief possible. Now that I understand the concept of long-acting meds better, I don't have those fears anymore. After the initial switch, I started checking out different sites on the web and found that there is this whole new resurgence in the medical field, where certain groups of pain docs are trying to remove the stigma attached to prescribing narcotics for chronic pain patients and are holding symposiums and seminars for other PM's and even family docs and specialists. They are trying to re-educate about the, as Ex puts it so well, the benefits to risk ratio.
Whatever you and your doc decide, I'm sure you can both come up with a plan that works for you. He sounds like a caring and concerned man. Best of luck and I know you'll get the info and support here that all of us CPer's need so very much. I'm a firm believer that "if you haven't lived it, you can't fully understand it." Well, everyone here certainly does. Take Care, cmpgirl
You have got a lot of good responses. The first thing I would like to say is that there is no ceiling to opiate meds like oxycodone, morphine, fentanyl. Unless they contain something else like tylenol. The only ceiling would be side effects. So in other words for some, a certain mg will work and for others it takes much more. That doesn't mean your a junkie or addict. It just means your body requires a different amount. There are people on this board that take 20 mg of Oxycontin twice a day and other that take 240 mg daily.
Like Brian said, fentanyl can cause your tolerance to meds to go up. Like Brian and Executor mentioned, methadone is a very effective pain med. Yes it is used for heroin addiction where the stigma comes from. However, if you are bringing a script to pharmacy for methadone, they know it is for pain and not heroin addiction. Heroin addicts go to a methadone clinic.
Another plus with methadone is that it works on something called NMDA. This helps keep your tolerance low to opiate meds. Methadone binds to more receptors more strongly than other opiate meds. It has a very long half life. It works on all the receptors but has a strong affinity for the mu receptor. The same receptor as morphine. Many people on meth notice that they don't have to change their dosages every office visit. So in my opinion it is worth looking into.
As far as looking on the internet.... I believe you can learn a ton from the internet (this board, medical research, etc.) Once you learn how drugs work in the body from the neurotransmitters, to the primary opiate receptors, it makes a lot more sense and gives you an understanding when your doc is talking about meds.
You are right that alot of meds have a stigma. Oxycontin, methadone, morphine. To give you once example, many people believe morphine is the strongest med around. This is far from the truth, it has just been the gold standard that other drugs are compared to and one of the first line drugs in an ER. In fact if you look at most equiananlgesic chart (gives medication conversions and comparisons), you will see that oral morphine has about a 1:1 ratio with hydrocodone. Meaning, 1 mg of oral morphine is generally equal to 1 mg of hydrocodone. Where oxycodone (percocet, oxycontin) is 1.5x stronger than morphine. And fentanyl is around 80 times stonger than morphine. Ok that was more than one example.
Not trying to confuse you, but knowing about these meds and how they work is knowledge in my opinion. Coming to a board like this, where people take these meds and have a wide range of different experiences is only going to be helpful to you.
So, I will get off my box now. But welcome to the boards. Read, ask questions, and you will learn alot.
Good luck with your pain management. Hope everything works out well for you.
...Another plus with methadone is that it works on something called NMDA. This helps keep your tolerance low to opiate meds. Methadone binds to more receptors more strongly than other opiate meds. It has a very long half life. It works on all the receptors but has a strong affinity for the mu receptor. The same receptor as morphine. Many people on meth notice that they don't have to change their dosages every office visit. So in my opinion it is worth looking into...
This is what I was getting at in my earlier post regarding tolerance. Aranger is great at explaining these things and has done a good job for you. I went from a very high dose of the fentanyl patches to 80mg of methadone daily and held to that dose for a couple of years before being switched to morphine. And I didn't even require BT meds.
But I am in no way trying to push methadone on you, I just want you to be aware of the benefits of this medication. Many folks and docs look at methadone as the last line of defense, while many others consider it right out of the gate. As always, it's a decision for you and your physician.
Wow, I figured I would get some support here, but had no idea I would get this much support and understanding. Thank you so much to all of you. A person can read all the post he or she wants, but they can't get the same feeling as posting and interacting. I've got so many questions for him tomorrow, he will probably walk out confused...lol. I will definately let you all know tomorrow how things go.
In fact if you look at most equiananlgesic chart (gives medication conversions and comparisons), you will see that oral morphine has about a 1:1 ratio with hydrocodone. Meaning, 1 mg of oral morphine is generally equal to 1 mg of hydrocodone. Where oxycodone (percocet, oxycontin) is 1.5x stronger than morphine. And fentanyl is around 80 times stonger than morphine.
Aranger provides some great info and is absolutely correct. However, it's important to note that because of the differences in potency, the doses are adjusted accordingly. For example, fentanyl is scripted in Mcgs instead of Mgs. Thus, it's all proportional. One isn't going to go from 10Mg of A to 10Mg of B and B is 5x more potent than A....Or at least they shouldn't.
Last edited by Executor; 03-24-2008 at 06:10 PM.
One thing I forgot to mention concerning Duragesic patch. I was on the Watson brand for 3 weeks. I had gotten an urgent email notification from my insurance about a week after stopping. It stated there was a recall for certain brands including the name brand and all others they make them for. It said there were some manufacturing defects containing a cut in the patch that could release potentially deadly amounts of product. That is another thing that concerned me about the patches. I done a little research on it and found a few claims of that with varying defects, but all could be dangerous. My doc said there were ways to get rid of the reactions and irritations and also ways to make them stay stuck on as long as it was not the medicine I was having the reaction to. We think it was the glue on the patch. That is one reason I did not pursue the patch anymore. It is a shame because it did work pretty well, but like most say, it did not last the full 72 hours. They normally lasted approximately 55 to 60 hours.
Has anyone ever had any defected patches? That can be scary.
Had my visit today and I think it went well. I saw the Physicians Assistant instead of the doctor this time though, but that is ok, she was very understanding and helpful. After discussing options and various things for nearly 20 minutes, she opted for the Methadone treatment at one 10 mg every 6 hours. She wanted to start low and work up to the right dosage. Told me to call her within a day or two if it isn't working. She said there is no reason for me to be hurting. We went through many medications. She really didn't want to continue the Roxicodone since I was having unrination problems with it, but she said it wasn't serious, but wanted to try other avenues. One good thing about the Methadone is it is much less expensive. Since hydrocodone worked good for me for a long time, she offered to have it compounded at a pharmacy to eliminate the Tylenyol. That way she could increase the dosage without the worries of the liver. I decided to give the Methadone a try and if that doesn't do it, I may try the compounding. She said they do not start people on Oxicontin which is ok by me. I don't really know the reason and I didn't ask. She wants me back in two weeks for checkup on meds. They done an EKG of my heart and will again later if I stay on it. Apparently there have been some heart related complications in some people, but she said it was very small. It concerned me about getting heart rate up doing exercise and she said it would be fine.
I did not know I had so many options. They really make you feel good about yourself when so many folks look down on you.
I have only taken one 10mg tablet anout 1-1/2 hours ago, but it hasn't helped any yet. It may take a couple of tablets before it starts working, I don't know.