Jerry Larson loved being an active babysitter for his 9-year-old granddaughter — chasing her outdoors after school and exploring the Science Museum on weekends.
All that changed after doctors reduced his monthly dosage of prescription opioids.
"Now all I do is sit on the chair," said Larson, 67, who suffers from severe back pain.
Amid a national movement to reduce opioid usage, the Burnsville man just wants his painkillers back.
Larson and others with severe, chronic pain are counterpoints to a state and nationwide effort to reduce opioid prescribing. First they followed doctors' orders and became dependent on the drugs. Now they fear losing them.
The campaign to limit prescriptions has emerged in response to an epidemic of opioid addictions and overdoses. Opioid-related deaths in Minnesota rose from 54 in 2000 to 402 last year, according to a Star Tribune review of state death records, even though the rate of opioid prescribing in the state has been relatively low.
This month, the Minnesota Department of Human Services rolled out stringent opioid prescribing guidelines, including a plan to track doctors and warn or sanction those who are too liberal with prescriptions. The U.S. Centers for Disease Control and Prevention and the Bloomington-based Institute for Clinical Systems Improvement (ICSI) have also issued guidelines that limit initial prescriptions for acute injury pain and urge alternatives to opioids for the treatment of chronic pain.
While none of the guidelines outlaw opioids for chronic pain, they might have spooked some doctors into cutting prescriptions and persuaded health insurers to impose limits that can create havoc for patients already on high doses of the drugs.
"Pendulums swing both directions," said Dr. David Thorson, president of the Minnesota Medical Association and a leader in the development of the ICSI guidelines. "Sometimes when they are swinging, they go too far."
Thorson admits that, like many doctors, he got swept up two decades ago by the movement to consider pain as a fifth vital sign. Marketing campaigns sought to convince the nation's doctors that opioids were the best choice for treating it. He has since apologized to his patients who became dependent on opioids.
"I have actually said to patients, 'You know, I was treating you the best way I knew. Now, we know better,' " Thorson said.
Because of his disability, Larson is a stay-at-home grandfather who looks after his granddaughter before and after school and maintains the family condominium for his daughter, who works in retail.
He believes he's a victim of an overreaction against opioids. He started taking them years ago due to back problems that caused compression in his spine and nerve pain.
He had a Fentanyl patch that emitted 50 micrograms per hour of pain relief, but that left him foggy, so he switched to 25 micrograms. Then his doctor cut that to 12.5. His monthly supply of Percocet also has been cut, from 120 pills to 90 — or three per day.
Larson said he needs two pills to get to sleep. If he wakes in the middle of the night, he often needs a third — leaving him with none to take for the next day if he wants his supply to last the month.
"Everything was fine and dandy," he said. "Now I'm in constant pain."
Joan Skeie, a retired schoolteacher in Coon Rapids, said she's fighting to keep her opioid prescriptions for severe arthritis and spinal deformities. Once allowed 240 pills per month, Skeie said a new insurance restriction left her with 60 to get through the first half of November. Only after her doctor appealed did the 83-year-old get her usual supply for the second half of the month.
"I barely get along on this," said Skeie, who takes a pill in the late afternoon just so she can tolerate standing to make dinner. "I need this."
Research has never proved that opioids effectively treat chronic pain, said Dr. Chris Johnson, an Allina physician who led the work group that created the state guidelines. Drugs have been misused for this purpose, he said, and now patients are caught in a spiral because they grow tolerant to opioids and need higher and more dangerous doses to achieve the same level of relief.
Even so, he said, "You can't just take opioids away from these patients. If it's been that long, they are now dependent."
Doctors could find themselves in a bind, between cutting unnecessary prescriptions and serving dependent patients. Many are choosing instead to simply stop seeing chronic pain patients because they don't want to risk getting accused of overusing opioids, said Dr. Alfred Anderson, a Brooklyn Park pain specialist.
Anderson wants to retire, but keeps getting referrals from doctors who no longer want to treat opioid-dependent patients, he said.
"I am so scared at this time for these people that I have virtually obligated myself to help them," he said.
Anderson said he understands the need for caution on opioid prescribing, because addicts have tried to dupe him into writing prescriptions. As a former member of the state board of medical practice, he also has seen doctors overprescribing pain pills or suffering addictions of their own.
But he estimated that one in 10 chronic pain patients won't find relief in alternatives such as physical therapy or even medical marijuana.
"They have failed with everything else and they have done very well" on opioids, Anderson said. "I've got a patient [on opioids] who built a deck and dug out two footings after having back surgery."
It's unclear whether opioid-dependent patients could wean themselves now that the risks are known, but Thorson said doctors should at least try because many of the patients are miserable.
"Even though they say they're OK, they're not really great," he said. "And they're all having some side effects, whether it's constipation or fatigue or sleeping or worrying about driving.
"There are people for whom opioids are the best choice," he added, "but that's not as many as we currently have."
Still, Larson said he believes the new restrictions are misplaced. Anyone abusing opioids is not getting them from his medicine cabinet, he said. He believes the answer is to crack down on illicit opioids instead. "They aren't looking at the real problem," Larson said.
Johnson said the new guidelines are critical — not just to prevent abuse, but to keep pain patients from becoming dependent on high-dose opioids that they didn't need in the first place.
"You can't continue creating these patients," he said.
Jeremy Olson • 612-673-7744