4/19/2018 by Share Your Story

Surviving Years of Step Therapy Only to be Blindsided

Wendy followed all the step therapy and then was told she was being taken off 100% of her pain medication


Ten years ago, in Washington State, Wendy Estherhouse had sinus surgery for a deviated septum. She was left with a damaged nerve in her face. Wendy spent a year seeing specialists, none of whom could fix the problem. Finally, with no solution, she saw a pain specialist. After enduring an endless step therapy she ended up on opioid pain medication. This is where this story begins.

“I NEED TO BE ABLE TO FUNCTION”

“I work full time, have three kids and three dogs. I’m in school to finish my bachelor’s degree too. I need to be able to function.”

Wendy, like many people who have chronic intractable pain, began with a hope that the cause of her pain could be treated and cured. She did all the tests and tried all the treatments suggested by the ear-nose-and-throat doctors, the neurologists and others. It was a long road that unfortunately ended right where it had begun – pain that wouldn’t go away. She then went to pain management.

PAIN MANAGEMENT STEP THERAPY

At the pain clinic she began a new step therapy; this one to determine the characteristics of her pain and how it would be managed. Traditionally, this begins with over the counter analgesics, physical therapy, and might lead to some minor surgical injections, psychotherapy and possible surgeries.

In time she and her pain doctor arrived at a point where her pain was managed well enough that she could work and function. That plan included the very effective use of opioid-based medication. “Eventually, I switched my care over to my primary care clinic since my condition and meds were stable. My PCP then wrote the scripts.  Over the last three years, I’ve worked with my PCP and a therapist to lower the doses of pain medication thanks to coping techniques I learned from my therapy.”

A DRASTIC DECISION

If Wendy’s story ended there it would be a relatively successful one. But recently her Primary Care Physician has decided that Wendy must be 100% off of pain medications – and after all the step therapy she underwent. That is like telling a person waiting for a water rescue that they have to take off their life jacket now while there is still no rescue in sight.

This drastic decision may have resulted from a shallow interpretation of the CDC Guideline for Prescribing Opioids for Chronic Pain, issued in 2016. The CDC Guide, a tool created as an evidence-based list of suggestions to help combat the opioid crisis, has been less than perfect. Dr. Bob Twillman, the Executive Director of the Academy of Integrative Pain Management critiqued the guidelines in an article in Practical Pain Management. In it he said “Simply put, the one statement that best summarizes the goal of the CDC guideline is, ‘Take all steps possible to minimize exposure to opioids when treating chronic pain.’ While CDC undoubtedly is well-intentioned, achieving this goal must be done in a way that does not harm the vast majority of people using opioids to manage their chronic pain; (people) who have a positive risk/benefit ratio and who do not misuse or abuse their vital medications.” But many doctors, wanting to do best by their patients and perhaps too busy to read the novella length document, over-employed the gist of the CDC’s suggestions.

WASHINGTON STATE’S PROBLEMATIC INTERPRETATION

In Washington State, they built on the foundation of the CDC Guidelines. Unfortunately, the interpretation by Washington State is stacked against Chronic Pain Patients (CPP). For instance, a key recommendation says:

“5. Prescribe opioids at the lowest possible effective dose. If the dose is increased but does not result in CMIF (Clinically Meaningful Improvement in Function), then significant tolerance or adverse effects to opioids may be developing and opioids should be tapered back to the previous dose or possibly discontinued.”

That is toxic rhetoric. It reflects a puritanical view of chronic-pain-patients as ‘abusers’. Phrases like “…may be developing…” are incredibly wishy-washy, while “…should be tapered…or possibly discontinued” is bold and aggressive, sending a strongly biased message to providers. And the harmful influence of such rhetoric is already ingrained, which may be why Wendy’s doctor wanted her completely off opioids, despite their clear ability to help her function.

“My doctor recently asked me to submit a urine sample (for drug screening), which I willingly provided. She emailed me that my urine screen came back positive for benzos and amphetamines, which would be impossible.  She implied I had used illegal street drugs or taken medication that she did not prescribe.

“I responded to her email that I would willingly submit to more, random urine screens or blood tests; that I was willing to jump through whatever hoop she deemed necessary to prove I was not taking unapproved meds.  She asked me to come in the following day for a repeat test. And of course, that test came back clean. My PCP had no explanation for why I would have had a test with positive results.”

MAKE YOUR VOICE HEARD

Wendy still lives in Washington and she is still in school and caring for her kids and her dogs, BUT an ongoing voice is needed to make sure she stays that way. So join us and lend yours. Or write to your legislators. PatientsRising will continue to work with you, with people like Wendy and with other influencers. Our goal is to make sure that patient’s issues are brought into the light, no matter what State they are in.


 

Jim Sliney Jr. is a Registered Medical Assistant and a Columbia University trained Writer/Editor who creates education and advocacy materials for patient support groups. He has worked closely with several rare disease communities. Jim also coordinates the patient content for PatientsRising and collaborates with other writers to hone their craft. He’s a native New Yorker where he lives with his wife and all their cats. Connections:   Twitter   Quora    Email


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