In light of the current opioid crisis, it is important to be aware of the benefits and risks associated with this class of prescription painkillers for those living with lupus.

• Introduction
• What are opioids?
• Dealing with an Opioid Addiction
• Alternatives to Opioids
• In Conclusion

Introduction

Right from the beginning, it is important to note that everyone experiences pain in their own way, and that there are complex physical, mental and emotional aspects to the feeling of pain. For those living with lupus, pain can range from occasional discomfort treated with over-the-counter medications (like aspirin or ibuprofen) to a daily agonizing pain that requires much stronger medications and treatments.  If you have lupus, wherever your pain lies within this spectrum, you should always consult with a trusted healthcare practitioner in order to make the best decisions for managing that pain.

Here are a few of important things to keep in mind:

1. According to the Centers for Disease Control (CDC) and the latest research, there seems to be little proof that opioids are effective for the particular pain caused by SLE or most other rheumatic diseases.
2. Yet, many with lupus, also suffer pain that comes with overlapping, associated conditions (comorbidities) and these may benefit from the use opioids in their treatments.
3. Chronic opioid use can actually worsen some of the symptoms of lupus or add to the adverse side effects of immunosuppressive medications and glucocorticoid drugs, like prednisone. The most common of these side effects include osteoporosis and myocardial infarction (heart attacks).

So, pain management and the possible use of opioids, may be an important decision for you to consider.  It is also a challenging issue for the medical community.

In a study published in September, 2019 for the CDC’s Morbidity and Mortality Weekly Report, researchers of the Michigan Lupus Epidemiology and Surveillance (MILES) Cohort described the use of opioids as prescribed for individuals with lupus in the management of the pain often experienced with overlap diseases such as rheumatoid arthritis and fibromyalgia. Out of the 462 individuals with lupus that were included in the study, 31% used opioids. Of those individuals taking opioids, the majority (68%) had been taking them for a year or more.  Furthermore, 22% of those individuals were taking more than one opioid medication at the same time.

This study also noted that patients with lupus – with at least one emergency room visit in the last year – were twice as likely to use prescription opioids in comparison to those who had not gone to the ER.  This led the researchers to call for increased awareness of the potential risks for lupus patients on the part of hospital emergency departments.  If you have lupus and need to go to the ER, these may be risks that physicians there are also assessing.

What are opioids?

Naturally occurring in the opium of the poppy plant, opioids are prescribed specifically for acute (short-term) pain. According to Johns Hopkins, some of the most commonly prescribed opioids include:

• Codeine (often added to other analgesics)
• Hydrocodone (Vicodin, Norco)
• Morphine
• Oxycodone (Oxycontin, Dazidox)
• Hydromorphone (Dilaudid, Exalgo)
• Fentanyl

Opioids work by blocking pain receptors in the body and the brain to improve pain tolerance. Opioids can often make a person feel relaxed and at ease or even high. Though exceedingly attractive for a patient in incredible pain and discomfort, these attributes of opioids also make them highly addictive. 

There are also side effects associated with opioid use. Johns Hopkins lists the following as some of the more common side effects:

• Drowsiness
• Confusion
• Constipation (possibly severe)
• Nausea
• Slowed breathing (a major concern)

Though this list is not exhaustive, in a 2012 study published in The Primary Care Companion for CNS Disorders, researchers concluded that the potential adverse long-term side effects of opioid use also include:

• Gastrointestinal complications (bleeding, bloating, bowel obstruction)
• Low heart rate
• Low blood pressure
• Sleep apnea
• Myocardial infarction
• Heart failure
• Depression
• Dizziness
• Sedation
• Increased risk of bone fracture
• Sexual dysfunction
• Immunosuppression
• Tolerance to dependence and possibly addiction!

Dealing with an Opioid Addiction

The warning signs of addiction should be taken very seriously and are the same whether or not you have lupus. According to the Mayo Clinic, these signs may include:

• Changes in mood, including depression and hostility.
• Changes in sleep
• Taking opioids in a way not intended by the prescribing healthcare practitioner or taking them “just in case” to prevent pain before it even occurs.
• Using poor judgment when making decisions.
• Trying to get multiple prescriptions filled from different doctors or too often “losing” prescriptions in order to get additional scripts written.

If you suspect you or a loved one may be addicted to opioids, seek help immediately.  Addiction is a disease and should be treated as such.  The National Institute on Drug Abuse suggests talking with someone you can trust as well as with a healthcare practitioner.

Individuals can also contact the Substance Abuse and Mental Health Services Administration (SAMHSA) National Helpline all year round, 24-hours a day, 7-days a week at 1-800-662-HELP (4357) for additional help and information.

Treatment will depend on the individual and the severity of the addiction. It is important that the individual in treatment and recovery have a strong support system around them to help them cope with the challenges of overcoming addiction.

Alternatives to Opioids

The most common medications that are used to treat the pain associated with lupus include:

• NSAIDs (non-steroidal anti-inflammatory drugs), which relieve pain by reducing inflammation and discomfort in joints, muscles and other tissues.
• Corticosteroids, such as prednisone or dexamethasone, which also reduce inflammation in the body, but also can suppress the overall immune response to prevent damage to tissues in the first place. Unfortunately, steroids also have many problematic side effects, especially with chronic use.
• Immunosuppressive drugs (like Imuran and Cellcept) and Anti-malarial drugs (like Plaquenil and chloroquine) and even biologics (like Benlysta) are also commonly prescribed drugs that may directly or indirectly help with pain management by reducing inflammation or other tissue damage. This may not be enough to stop the pain and they also have their own significant side effects.

In Conclusion

The misuse of opioids is a serious crisis in the United States and other countries, but that should not keep those with lupus from being prescribed opioids if they are necessary and appropriately used.  Also, it is increasingly common for those who have been prescribed long-term use of opioids to be required to enter a pain management program.  This can be challenging for someone feeling pain and already navigating the complex procedures associated with lupus and other overlapping conditions. 

So, it is important to be informed about your own pain and to be able to advocate for yourself … or have someone to advocate with you.  You may not always feel heard or respected, but you can ask for other opinions. If possible, find a pain management practitioner who understands your conditions and your particular form of lupus, and then communicate with them honestly.

It is always important to keep regularly scheduled visits with your healthcare practitioner if you are prescribed opioids for the treatment of pain associated with lupus.  More than likely, the prescribing practitioner will want to monitor your health and progress during the course of treatment. Be an active participant and partner in your treatment plan by taking note of any changes in your physical and mental well-being. Do not be afraid to discuss your concerns with someone you trust.

Of course, if opioids are not for you, there are other effective pain-management options and alternative therapies available that your healthcare practitioner can discuss with you.

 

References

Baldini, A., Von Korff, M., & Lin, E. (2012). A review of potential adverse effects of long-term opioid therapy: A practitioner’s Guide. The Primary Care Companion to CNS Disorders, 14(3). Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466038/?report=reader

National helpline. (n.d.). Retrieved from: https://www.samhsa.gov/find-help/national-helpline

Somers, E., Lee, J., Hassett, A., Zick, S., Harlow, S., Helmick, C.,…Barbour, K. (2019). Prescription Opioid Use in Patients with and Without Systemic Lupus Erythematosus – Michigan Lupus Epidemiology and Surveillance Program, 2014-2015.  Morbidity and Mortality Weekly Report. Retrieved from: https://www.cdc.gov/mmwr/volumes/68/wr/pdfs/mm6838a2-H.pdf

What are opioids? (n.d.). Retrieved from: https://www.hopkinsmedicine.org/opioids/what-are-opioids.html

What are opioids and why are they dangerous? (n.d.). Retrieved from: https://www.mayoclinic.org/diseases-conditions/prescription-drug-abuse/expert-answers/what-are-opioids/faq-20381270

What to do if your adult friend or loved one has a problem with drugs. (2019). Retrieved from: https://www.drugabuse.gov/related-topics/treatment/what-to-do-if-your-adult-friend-or-loved-one-has-problem-drugs

 

Author: Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus. 

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.