Weaning high dose methadone down to a lower, safer, less likely to stop breathing and die dose is difficult, but it can be done. It needs both a determined patient and a determined physician who are willing to work together.
In 2010 I took a class in buprenorphine treatment for opiate overuse syndrome from the University of WA Medical Center and got started with their telemedecine, once a week, on line with the Pain and Addiction Clinic. Each week there was a teaching half hour and then an hour where we could present patients anonymously on the telemedecine to a panel: a pain specialist, an addiction specialist, a psychiatrist, a physiatrist, and a guest physician. Five consults at once! And they would discuss the case and fax recommendations to me.
Three weeks after the course, police and Medicaid and the DEA shut down the pain clinic 5 blocks from me, taking the computers. I acquired 30 patients in 3 weeks. Trial by fire.
By 2012 Washington State passed a pain medicine law. This says that a primary care physician can only prescribe up to 120 morphine dose equivalents for chronic pain. Anything higher and the patient should be checked by a pain specialist and there were not that many in the state.
120 morphine dose equivalents is up to 20 mg of methadone or possibly 30mg. Methadone has a very long half life so it's a bit weird. Hydrocodone is one to one with morphine and oxycodone is 1.5 to one, so 90 mg of oxycodone is 120 morphine dose equivalents.
The law requires urine drug screens, careful record keeping, screening for adverse childhood experiences and regular visits. If the pain medicine is not effective, it is to be weaned. I had a couple of patients with over 100mg of methadone daily. That is way over the 120 morphine does equivalents and UW helped me help the patients start weaning.
First, they recommended dropping the dose by about 1/3. Some patients left immediately. I would give patients links to the law on line and explain that the concern is that opioids in combination with other sedating drugs and alcohol are killing more people than either guns or car wrecks or illegal drugs in the United States and the CDC has declared it an epidemic. Honestly, doctors really take the "first, do no harm" seriously and we do not want to kill people. One angry patient said "Your first job is to keep me pain free." I said, "No, my first job is to not kill you."
For those who stayed, dropping the dose by 1/4 or 1/3 worked. They had about two weeks of mild withdrawal symptoms and then gradually felt better. These were at doses of 120-150mg methadone daily. We started weaning then by 10mg or about 10% every couple of months. The UW Pain Clinic was doing this simultaneously.
In 2012 the WA PMP started as well. This is a central pharmacy reporting for all controlled substances. Controlled substances means addictive and monitored by the DEA. Even the head of the WA Pain Clinic found that he had 5-6 patients who were getting opioids from 4-5 different doctors. He said, "We do have to check because I thought I knew my patients and I would have none. I was wrong and I was surprised." Those patients could be taking way more than any of their doctors knew or could be selling pills. Not a happy thing.
Once the methadone folks got down to about 1/3 of the high dose, we had to slow down. For my patients that meant at 40-50mg. The head of the pain clinic said wean by 5 mg or 2.5mg and do it every 6-8 weeks.
As people were weaned, their pain level stayed about the same. They would have an initial increase for the first two weeks. I describe it as follows: Think of it as if you are in a room listening to a stereo. The pain medicine is like noise protecting headphones. Once you are wearing the headphones, your brain says, uh, I can't hear (feel pain). Hearing (feeling pain) is important information, so the brain turns up the volume. Way up if the dose is really high. Then you take the headphones off: OW!! IT'S TOO LOUD! THE SOUND (PAIN) IS BLOWING OUT YOUR EARDRUMS (HURTING LIKE HELL)!!!
Weaning slowly gives the brain a chance to turn the volume down on the receptors. UW said that at best chronic opiates lower pain an average of 30%. After a while, I said I had trouble telling the difference between withdrawal pain and increased chronic pain: they look the same. UW said, "Looks the same to us too." But we had frequent visits and an ongoing discussion about pain. Pain is necessary for survival: you have to know if you are injured. Diabetics who can't feel their feet are instructed to look all over their feet every day to check for injury and infection. I had one gentleman who couldn't feel his feet and put them on a wood stove because they felt cold. He was needing skin grafts from the burns. So we need to feel pain and not numb it all the time. Also pain has three or more components: the sharp cut/broken/bruised immediate pain. Second is nerve pain. Third is emotional pain, and we don't yet have a meter that gives us what percentage each is contributing to the total sum. When I have a new chronic pain patient, I say that ALL THREE must be treated. We can argue about the details, but they can't leave the emotional piece out.... or they have to find another doctor.
Also, at the higher doses, hyperalgesia is common, pain from the opioid itself. People felt better at lower doses. I gave people the links so they could read the law and the CDC information themselves. They were shocked and angry and threatened at first, but the "I don't want you to die from too high a dose and it's not safe and I am sorry." message would get through eventually.
"Why do you have to do urine drug screens?" say some people. "You are treating me like an addict."
My reply, "What do you think the addicts tell me?"
The person thinks about it. "The same thing?"
"Absolutely. So I can't tell unless I check. Also, the boundary between chronic opiate use and opiate overuse is a lot thinner than we thought, so I have to check because all chronic opiate people are at risk for overuse." The DSM-V combines opioid dependence and opiate addiction into opiate overuse syndrome, a spectrum from mild to moderate to severe.
We also talked about other ways of dealing with chronic pain. John Kabat Zinn's mindfulness meditation classes drop pain levels by an average of 50%, so better than opioids. And way safer.
Meanwhile, since people could no longer get opioid pills from 4-5 doctors at once, the supply in Washington started drying up. Some people realized they had opiate overuse syndrome as well as chronic pain and turned to methadone clinics or buprenorphine clinics. Others went to heroin. The heroin overdose death rate has risen. I hope that as the stigma surrounding "addiction" changes into a better understanding of chronic pain and opiate overuse syndrome, more people will be able to get treatment and the death rate and heroin use will go back down.