Posted by Anthony Quest on May 3, 2004, at 18:34:21
In reply to Re: Pain Med Relafen » Anthony Quest, posted by flipsactown on May 3, 2004, at 1:47:21
FST - I can see you have been around the block a few times, so I'll cut out the basic stuff.
First, I hope you realize and you seem to that the problem and pain you are dealing with, and by that I don't just mean the pain of whatever your chronic illness is but the pain of being treated like a pariah by your doctors and demeaned as if you no capacity to judge what is in your best interest, is part of the problem. You decided at the high dose of Oxycontin you were on that you were completely at the mercy of your pain doctor for RXs and that if he chose not to prescribe, or moved, or was shut down by the DEA - you would be on your own. That is physical dependence + the very real possibility of having to at some point in your life - perhaps at a very inconvenient time - go through withdrawal. That you choose to do it on your own terms and end the dependence on your doctors is completely reasonable. I was writing as if you assumed like most that pain management doctors care about you when it comes to prescribing opioids -they care first about their license. Second some care about their patients other about money. Third, they will treat what they diagnose, not what you know and feel is wrong. Fourth, the system is very messed up, if you can stop being a part of it, you will be empowered. Good luck!
Now for the specific advice.
"I have been taking it for less than a week so it is probably too early to feel any pain relief."
Relafen is like Advil or Aleve. It starts working immediately and peaks in your blood a few hours after ingestion. It does not build up over time, so the relief you get now is likely all the relief you will ever get. Unless you increase the dose and you are taking less than the ceiling dose, I think you are not going to see increased analgesic effect from Relafen. I hate to ruin whatever placebo effect this might have had for you, but it's the honest truth according to all literature I've ever read.
Also, there are risks with NSAIDS like Relafen. They are probably minimal, but unlike opioids, NSAIDs are toxic, i.e. they are metabolized by the liver and some people will have liver function altered. You will need to get perioidic blood tests, at least at the beginning to check your blood AST/GGT and other LFTs to make sure that you aren't one of those people whose bodies cannot metabolize NSAIDS. If you are you will end up with a pickled liver. Second, if you have any bleeding disorders, Relafen will thin your blood. This is not a problem for most people and it's no worse than aspirin, but if you are having surgery or recovering - or if you have ulcers, anemia, etc, you need to avoid this.
You will see a lot of statistics on deaths from Oxycontin. I think there were 232 related Oxycontin related deaths - only 12 where Oxycontin was the sole drug in the persons body - in the period 1998-2002. Each year 32,000 people die from GI complications resulting from NSAIDS, mainly the elderly. These don't make the news -they are not as glamorous. Another irony, you never are asked to sign and informed consent that you know the dangers and risks of NSAIDs, although you'll have to sign a consent upon consent to be treated with what medicine agrees are not toxic drugs - opioids.
The difference is opioids can be addicting, but again, addiction is not the same as toxic. Most people who take opioids for pain who don't have substance abuse problems beforehand, don't ever get addicted, so the whole thing is very much overhyped by the media, but I guess I am preaching to the choir.
"I was hoping it will be a good supplement with Codeine to enhance pain relief."
I can point you to specific studies, but all the literature I have seen is that codeine by itself is no more effective than aspirin. That is why codeine is seldom prescribed alone except for its other effect like cough suppression.
I think mainly codeine may be suppressing withdrawal which can be painful in itself, but every body is different and you could be benefitting from it more than most. I just don't think codeine is going to do much alone or in combination with something else.
"My painmgmt doc, who I had to practically beg to rx Oxy to me over 2 years ago, would not rx Oxy to me initially, but did rx Oramorph. I got sick to my stomach, very constipated, vomiting and the whole 9 yards. 2 weeks later, my paindoc decided to ok Oxy which I tolerated very well for 2 years."
Your reaction to oral morphine is typical. It's an opiate as opposed to an opioid (although for convenience both are sometimes grouped together and called opioids which is how I use the term).
Opiates are opium, morphine, codeine, and some others I can't remember, Basically, they are a more natural form of the opium substance. They are known to cause a greater histamine release and are associated with increased incidence of side-effects like exactly the ones you describe -e.g. nauseau, vomitting, constipation - classic side effect profile.
The whole reason the drug companies came up with Oxycontin - an opioid which a semi-synthetic or chemically altered opiate - is because the side effect profile is a lot less and the pain relief is greater or unchanged. The main reason is that less histamine release occurs. This is why you get less itching with synthetic and semi-synthetic opioids. Synthetic opioids would be fentanyl, methadone, hydromophone, etc.
I see no reason to try people on morphine first when it's almost assured they do worse with it than the other newer synthetic opioids. My problem is itching. One can try taking an antihistamine like 12.5 mg of Benadryl, or also Phenergan 25 mg. Some say that helps, others say it makes no difference. I can't tell.
One thing you might consider is trying morphine again with better side-effect control. You could try Zofran 8 mg for nausea and vomiting, or perhaps Compazine. Also, you can use a small dose of rectal haloperidol for really intractable vomitting. For constapitation, prophylactic laxative therapy willl usually do the trick - especially gentle is prescription Miralax.
But I assume you want to continue detoxing, which means no opioids.
"When I asked my paindoc about bupnorephine for detox and possibly as an antidepressant, he got very worked up and made it very clear to me that he was not going to rx Bupe because that would be detoxing one opiod for another. However, he did not think twice about rxing Codeine which is also an opiod. I think it was because Codeine is a very weak opiod and that I had been taking it for over 5 years with no problem of withdrawals. He even offered to rx Methadone. So his statement about not wanting to rx one opiod for another is hogwash."
Yes, they are terrible liars aren't they. I think that violates medical ethics. Shame on them, but they really have none.
Unfortunately, you violated one of the cardinal rules of the game. You asked for a medication directly by name. This is in all the literature given to doctors in identifying drug seekers. "Does the patient come in asking for a specific medication?".
These profiles were developed long before the internet and it's virtually meaningless now that a patient asks about a particular drug. What thr question wad aimed at idiot who didn't realize there was something not quite right with a new patient coming in with no records and asking for Dilaudid. There are lists of other "drug-seeking behavior" such as running out of medication. Reporting allergies to medications. Et cetera. Basically, drug abusers figured out how to lie about things so that they could an RX for what they wanted. They didn't want codeine so they said they were allergic to it. They wanted a refill but couldn't get one, so they just used it up quick. Anyhow, those tricks don't work anymore but they got applied to ALL patients. Many of us do have allergies, many of us do have periods of increased pain requiring increased medication use, unfortunately the doctor can declare this "drug seeking". It's a major power element the doctor has over you. If you annoy him, he can call you a drug seeker, cut off your RX, and make it very hard for you to get future RX by putting something bad in your records. I cannot imagine any other profession where we give the doctor more power over us and doctor's are more abusive of it. Sorry, I digress again.
These days I would be more surprised if someone afflicted with chronic pain did not research and just showed up in the doctor's taking whatever was given.
However, you probably hurt yourself in a major way by asking for buprenorphine outright. You always have to go about thusly:
Doctor: How are things going?
You: Not so good:
Doctor: What's the matter:
Answer: This morphine, it's causing me problems?
Doctor: Not helping the pain?
You: Oh it's helps the pain but I can't take these side effects. It works so well but I am vomitting all day. It wont' get any better either, all month. If only there were something else that worked so well without the side effects....(tailored to whatever the situation is you might allude to something by its characterized but never by name).
Let the doctor think he thought of it. Much better. Isn't it pathetic that grown adults have to behave like children, but this is the model we have accepted in this society and I don't know how to change it.
Anyhow, another mistake you made is specific to Buprenorphine, Subutex. It's only been approved for pain in susbtance abusers. It has not been FDA approved for use in general pain management. Pain management doctors are debating whether its legal for them to prescribe it for regular patients. There was no way this doctor would prescribe it, and he certainly wasn't going to say that -"It could be great for you medically, but I am not sure what the law is and since I have not bothered to find out, and won't admit that, it's easier for me to say you are drug seeker." I am sorry that happened.
One option if you really think Subutex would be the drug for you is to proclaim yourself a substance abuser and then go to a treatment program. This has MAJOR drawbacks so I would not recommend it, but I know some people so desperate for pain relief that they have entered methadone treatment this way.
Certainly it makes no sense to say "I won't substitute one opioid for another and then offer methadone. Either the doctor was thinking you were too ignorant to notice the contradiction or the doctor is too stupid to know he is contradicting himself. If pain doctors aren't so rare to find, I'd say fire him, but the next guy could be worse. Some thing to be said for staying with evil you know rather than the one you don't.
Also, detoxing from methadone is true hell I have heard. It's half life is 24-36 hours. Oxycontin withdrawal is a pience of cake compared to that.
"I tried the patch with this same paindoc and I did not get the good pain relief as Oxy. So the patch was history."
If you were at 160 mg Oxycontin daily that is around anywhere depending on your source of oral morphine 300-600 mg of morphine by mouth. Maybe you should have not given up on the patch until at least 200 mcg every 48 hours was tried. The label on the patch states you can go up to 300 mcg. How high up did you go? Then again, if Oxycontin at the dose of 160 works, there is no reason to go that high on the patch.
Then again, the patch just seems to not work on some people. It's also hard to detox so consider it a life long endeavor at a high dose.
"Yes, I was the one to ask for the home detox, mainly because I did not want to be at the mercy of a drug. But, if going back to Codeine and supplementing with anti-inflamatories does not give me the pain relief I was getting with Oxy, I will not hesitate to go back to Oxy. I just want to try the lesser of two evils since I will need some narcotics for the rest of my life. "
Your doctor who prescribed the Oxycontin is responsible for your withdrawal from it. Let me make to recommendations I am fairly certain about presuming that you didn't abuse your Oxyconting significantly (i.e. take massively more than was prescribed or snort it) and you didn't use opioid from any other source.
Your dependence on Oxycontin is the medical responsibility of your physician. If you have something go wrong, it's his malpractice liability insurance that is going to have to pay for it. Unless he can document that you misused your medication (and even then I am not he isn't liable for that because he has a duty to know), and simply running out a few days early is more indicative of his underprescribing than your abuse, I would be sure to indicate to him you are holding him fully responsible for your tapering down.
1. You have the right to his medical advice and intervention during any part of your tapering down process.
2. Stop saying "Detox" because this evokes the language of drug addiction. The doctors are crazy about this because if they are caught prescribing to an addict, the state can try to take away their license. I know what you mean, but you have to use the PC term which is "tapering down" or "weaning off".
Ask him for a written plan of treatment as to how you should be "tapering down" your Oxycontin. Ask him what medications he recommends for pain that reemerges from the underlying problem or as a result of withdrawal. Keep his office informed of change in symptoms.
3. Ask to see your medical records from his office. I am guessing they are a phone book and his office will try to charge you by the page. Say nice try, but you are excercing your HIPAA rights under federal law to inspect your records for accuracy. That allows you - under my interpretation - to go to the office and read through your entire chart. It should be accurate and should contain a record of every call, every RX, every converation and treatment. Make sure he hasn't put down anything that isn't true, and if so, have that specific page copied.
4. Have a little chat with the pain doctor and say you spoke with a family member or friend in the legal profession who was very concerned about "home detoxing" and believes that your doctor has an obligation to treat your pain and help you titrate down responsibly - there is no home element involved.
It's important to strike the right balance. You dont' want to seem so litigious that he gets scared and doesn't know what to do and panics. You also don't want to continue getting pushed around.
From what you have said about this guy, I think he is better than most. There is a lot of misunderstanding and if you have to communicate through nurse practitioners and assistants, you dont' get a lot of face time. Make sure you see him, and have a heart to heart about what you would like to see happen.
Explain you know you will need to be on opioids indefinitely but that you hate the idea of being dependent on a 30 day prescription. If you have no substance abuse problems, state that "I don't have any substance problem, I think we have had misunderstandings because when my pain has increased I have taken more medication when perhaps the right thing to do was come in soon (never mind the fact you couldn't even get your phone calls returned).
See if he agrees with what you are doing, and if not what he advises. Do a lot of internet research, but don't tell him that. Be prepared to be assertive and tell him that you are prepared to go to the state board of medicine, and also your attorney. If there is anything wrong with the records of couse - you have a cause of action.
The dual approach of niceness coupled with implicit lawsuit might get you the treatment you deserve. I don't want to advise you on home detox with codeine because I think it's not going to work for you. If it did, you would know it.
The only possible way, and bring this up with the doctor would be some expensive interventional pain management techniques like nerve blocks. They may or may not work. It all depends on what type of pain you have. This generally involves a needle inserted into your spinal column injecting anesthetic and steroids into a part of the spine where the pain is originating or travelling. It ain't cheap, and the first series are just diagnostic to see if they work. Permanent blocks are generally reserved for cancer pain.
The drugs I'd recommend as pain adjuncts:
if there is a neuropathic element:
Elavil 10 mg, Neurontin 800 mg tid, Zanaflex 4 mg tid, + the Relafen
The elavil and neurontin are for neuropathic pain.
Zanaflex is a muscle relaxant that doesn't have CNS effects. Others are Soma (will make you woozy but also takes the edge of withdrawal), Cyclobenzaprine (Flexeril), Skelaxin, and others.
It seems like adding one of these will be better than trying to solve all the pain with an NSAID alone.
Also, you could try Lidoderm patches. This a bigger version of the Duragesic - much bigger- but no narcotic, rather topical anesthetic. It will stick to your skin and numb and area of your body. I was skeptical but it does work unless your pain is deep bone pain.
I realize that I raise a lot of issues here. Unfortunately, I know most of these through personal, family, or professional experience.
It's not right people go through what you are going through. I have some practical tips if you go back to Oxycontin though and are worried about the dependence issues, especially being cut off by your doctor.
If that's what so you decide, let me know and I'll share whatever limited insight I might have.
Again, I am sorry that you and so many others have to suffer needlessly.
There is a saying in the East. Life is suffering. It's true which makes needless suffering all the more tragic.
P.S. For withdrawal symptoms, also look up Catapress (generic is Clonidine - a blood pressure medication, but it apparently blocks the major withdrawal effects of opioids. I don't know how effective it is, never tried it myself, but it's pretty standard. Your pain doctor should know. It's used by all the professionals for opioid detox- which for the record doesn't apply to you -"tapering" is what you are doing).
P.P.S. Toxifying implies toxin. The word got used by alcoholics because alcohol is a toxin to the body in any amount. The Relafen may be toxic but not Codeine or opioids. Addicting yes, but you are not going to harm any organ, thin your blood, or scar your liver with lifelong opioid use. That can't be said for alcohol, NSAIDS, and the newer drugs we don't even know enough about to be able to say what will happen.