Herkimer resident Jeffrey Pierson considers himself a victim of the opioid epidemic.

Pierson has never been addicted to painkillers or even tempted to purchase them illicitly. But he’s been hurt, he said, by all the new scrutiny of painkiller prescriptions the epidemic has brought.

“It has made these medications totally unavailable to us,” he said.

Pierson’s doctor started weaning him to a lower dose in 2015. Then a doctor for the New York State Workers Compensation Board decided to taper him off all opioids earlier this year. Pierson now frequently spends 23 hours a day in bed, a victim of unrelenting back pain from which opioid painkillers used to provide relief.

“They have taken all of my pain medication away, every bit. I have tried to find a facility … that will write an opioid prescription. Impossible,” he said.

“Basically the state of New York has thrown us away,” he said, referring to pain patients who relied on opioids for relief in the past.

Many patients have, like Pierson, spoken out about new restrictions on opioid access — based on doctors’ reluctance to prescribe, insurance restrictions and state regulations — and the pain they experience as a result.

Dr. Thomas Madejski, president of the Medical Society of the State of New York, called them "legacy patients."

“I don’t think there is any question, there was an excess of opioid prescribing and we created a bunch of habituated people,” said Madejski, an internist and specialist in geriatric, hospice and palliative care.

In general, cutting back on opioids, with their risk of addiction and potentially serious side effects, is good, he acknowledged. But general guidelines don’t always work out well for individual patients, he said.

“We’ve had some people who were doing well without side effects, without clear negative effects who have been worse off because of the push to reduce opioid use in general,” Madejski said.

The problem isn’t so much for acute pain patients, who might receive fewer pills after an injury or procedure than in the past, said Dr. Kevin Mathews, medical director of palliative medicine and integrative medicine programs for the Mohawk Valley Health System. Most of them do fine with smaller prescriptions, he said.

“But the people who are having difficulties are people (with chronic pain) who are on stable doses of narcotics who did not have difficulties with misuse, but got caught in the middle of this sort of whiplash reaction to opiate prescription. That’s a group that just has been really devastated by this,” Mathews said.

There are nonpharmaceutical treatments for pain that can help patients like Pierson, he said.

“But it’s not going to alleviate his level of pain. It’s not going to change that very much,” Mathews said.

A case study

“When it’s bad, it’s like somebody is stabbing you in the back and the thing is, you can’t find a position that relieves the pain, except fetal,” Pierson said, speaking from the bed where he spends most of his time since doctors began cutting back on his supply of prescription painkillers.

Pierson’s pain started back in 1987 when he injured a disk in his back while working as a lineman for Niagara Mohawk. He had surgery, but started taking painkillers in 1992.

Then he injured his back on the job again on Christmas Day in 2003 when he rolled down an 8-to-10-foot cliff.

“Things got so much worse. That’s when I started the Valium (for muscle spasms) and the hydrocodone,” he recalled.

He tried various treatments for pain: epidurals, physical therapy and osteopathic manipulation, and found some relief.

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Pierson retired in 2004 and — with hydrocodone, Valium and those other treatments — did well enough to help his wife remodel their kitchen entirely. He was able for a long time to work a few hours at a stretch before needing to rest, he said.

By March 2015, he was taking three 5-milligram Valiums and up to eight tablets with 10 milligrams of hydrocodone and 325 milligrams of acetaminophen daily. Then the opioid epidemic hit.

His drug regimen came under scrutiny, both for the amount of hydrocodone he was taking and for the dangerous combination of mixing an opioid with Valium, a benzodiazepine.

His primary care doctor began tapering his dosages. Then in March of last year, the New York Workers Compensation board sent him for an independent medical examination. That doctor decided he didn’t need Valium or hydrocodone; he wanted to wean him off both in six weeks. Pierson’s doctor protested, arguing that such a rapid tapering could prove dangerous. But Pierson took his last hydrocodone in October and his last Valium in November.

He still has a prescription for one hydrocodone a day — with half as many milligrams of hydrocodone as he used to take — but he questions whether it’s worth the $80 a month he’d have to pay out of pocket since workers comp won’t cover it.

“So now, I have absolutely no pain medicine,” he said.

Pierson goes out once or twice a week, including grocery shopping trips with an electric cart and a weekly dinner out with his wife. Too much time in bed leads to other health problems, he noted.

But for the most part, he lives out his life in his bedroom.

“I basically ended up like this. I have to force myself to get up and sit in a chair. I have all my meals right here. I only go to the table for holiday meals,” Pierson said.

Individualized treatment

When it comes to chronic pain in particular, opioids can be problematic drugs, as described by area doctors. Even when patients don’t become addicted, they develop tolerance, meaning they need more and more of the drug for the same pain relief, and can become physically dependent on the drug, suffering withdrawal if they stop taking it.

The drugs also can lead to hyperalgesia, actually making a patient’s pain worse over time.

They react dangerously with certain other medications, including benzodiazepines like Valium. When doses get too high, the risk of death goes up sharply.

Patients should be monitored with regular urine toxicology screens, which not all medical practices can easily accommodate.

And it’s not clear how effective they are in treating chronic pain.

“That’s a tough question. It’s probably very patient dependent,” said Dr. Ross Sullivan, assistant professor of emergency medicine at Upstate Medical University, an addiction medicine specialist and head of a heroin treatment clinic in the emergency department at Upstate University Hospital.

Sullivan also noted that there still aren’t any guidelines clearly delineating which patients should be treated with opioids and which should not.

Some state and federal actions, including letters of concern and crackdowns on doctors whom regulators believed were prescribing opioids too freely, have scared some good doctors off opioid prescriptions, Madejski said. And the need to monitor chronic pain patients with regular toxicology screens is simply too difficult for some medical practices, Mathews said.

Then there’s the workers compensation issue that hit Pierson. If workers compensation is paying for care and decides not to cover opioids, the patient can’t get coverage, not even from their regular health insurance, Mathews explained.

But the reality is that patients like Pierson, wisely or unwisely, have found pain relief through opioids for years.

“That general push (away from opioids) is not inappropriate, but you need to individualize it to patients,” Madejski said.

He does try to taper all his chronic patients down below the dangerous threshold of 100 milligrams daily morphine equivalent dose (a way of comparing doses of different opioids).

“We’ve been able to get many, but not all, of our patients down over time,” he said.

“I try,” he added, “not to make patients’ life worse.”

Some patients can function, and even work, with dosages over that threshold, Madejski said.

But tapering or eliminating doses too quickly — on the timeframe some insurers have pushed — can be dangerous, Sullivan said. Long-time opioid patients can go through withdrawal, suffer health problems, develop anxiety and/or depression, suffer considerably more pain and possibly even end up on the street looking for opioids, he said.

Pierson will turn 70 this summer and wonders why everyone is so worried about the risks and long-term consequences of opioid use in his case.

“Who the hell cares if I’m addicted? I mean, what’s the difference if it improves my quality of life?” he asked.

Pierson said he’s given up any expectation of ever being prescribed opioid painkillers, but said he hopes to raise awareness so others won’t end up like him.

“In my mind, I don’t understand why I have to suffer,” he said, “when all I did was take this medicine, which relieved my pain.”

Contact reporter Amy Neff Roth at 315-792-5166 or follow her on Twitter (@OD_Roth).