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Lupus and Low Disease Activity

 

Achieving Low Disease Activity

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Everyday, individuals living with lupus learn more and more about their disease. They learn how lupus uniquely manifests in their own bodies, how they will react to the medications and treatments prescribed by healthcare professionals, and how to live life to its fullest in spite of the uncertainty of what each day may bring. Researchers undauntedly continue to compile information through studies and surveys in the hope of one day finding a cure. The lupus community itself – whether it be individuals with lupus, medical practitioners, educators and researchers, or those who provide emotional support for loved ones living with the disease – continues to collectively come together to build a body and wealth of information to help ease the burden of lupus today and in the future.

While finding a cure is the ultimate goal, what is an optimal goal for an individual living with lupus in the here-and-now? Achieving a Lupus Low Disease Activity State (LLDAS) is key to feeling your best today and possibly keeping symptoms to a minimum while waiting for a cure. Achieving LLDAS means experiencing the most minimal of symptoms and discomfort as possible while on the least amount of medication as possible in order to maintain a good quality of life.

What is Lupus Low Disease Activity State (LLDAS)?

There are numerous studies that have tried to define and measure the various disease states of lupus.  Medical experts from Hong Kong, China, Philippines, Thailand, Singapore, Indonesia, and Australia originally compiled a list of 56 items that indicated when an individual with lupus could be experiencing a decline in the manifestation and severity of symptoms. This very inclusive list was reviewed by a smaller panel of experts – the Asia-Pacific Lupus Collaboration – and has since been honed down to five items that were unanimously ranked the highest indicators of achieving Lupus Low Disease Activity State (LLDAS).

These five key indicators of the presence of LLDAS include:

  • An SLEDAI 2K reading of ≤ 4. SLEDAI (Systemic Lupus Erythematosus Disease Activity Index) measures disease activity. An SLEDAI reading of ≤ 4 means that there is no activity in the renal system, central nervous system, cardiopulmonary system, and there is no evidence of vasculitis or fever. There also cannot be any evidence of hemolytic anemia or gastrointestinal activity.
  • There can be no new features of lupus disease activity compared with the prior assessment.
  • An SELENA-SLEDAI PGA score of ≤ 1. SELENA (Safety of Estrogens in Systemic Lupus Erythromatosus National Assessment and Physician’s Assessment) is a cumulative and weighted index used to assess disease activity that provides more symptom specificity, but does not change overall SLEDAI scoring. An SELENA-SLEDAI PGA reading of ≤ 1 means there is no new disease activity as compared with the prior assessment.
  • The current prednisolone dose an individual with lupus is receiving is ≤ 7.5 mg daily.
  • Maintenance doses of immunosuppressive drugs and approved biologics are tolerated well, and the individual with lupus is not taking any investigational drugs.

There are many ways in which an individual living with lupus can work with medical practitioners to attempt to achieve these five LLDAS outcomes. In addition to conventional or allopathic treatment plans, one way may be to practice an integrated medicine approach which not only includes conventional medicine, but other practices and approaches that appear promising.

Keep reading to explore some of the approaches beyond the conventional or allopathic practices that an individual living with lupus may take in order to more fully understand and manage symptoms, potentially leading to LLDAS.

Integrated and Complementary Approaches to Achieving LLDAS

While many individuals with lupus choose to treat their disease with mainstream medicine and standard medical practices, others may choose – or want to learn about – more integrated approaches to treatment that may complement their existing treatment. These provide a more holistic approach that also considers the mind, body, and spirit of the individual living with lupus. Many find it empowering to be able to treat their whole being!

Here are examples of some popular treatment approaches that can be integrated with conventional medical practices:

Functional Medicine

A functional medicine approach uses science to treat the individual based on their own unique symptoms, biology, chemistry, etc. This approach considers the specific root causes of an individual’s unique manifestation of lupus as opposed to treating only the symptoms. Individuals with lupus work closely with their medical practitioner to determine the course of treatment that is optimal for that individual to work towards achieving LLDAS.

Naturopathy

The naturopathic approach supports self-healing by focusing on the power of nature and prevention. Popular naturopathic practices include looking at an individual’s nutrition and diet, integrating the use of supplements and vitamins, ingesting the right combination of antioxidants, fatty acids, oils, etc., and focusing on the use of natural medicines derived from plants, herbs, tinctures, etc. Many naturopaths will also incorporate other complementary medical practices into treatment.

Complementary Medicine

Many other approaches may be used to complement existing treatments and therapies. These approaches may include the use of acupuncture, Chinese herbal medicine, mind/body interventions (massage, meditation, hypnosis, yoga, tai chi), cognitive behavioral therapy (CBT), and aromatherapy. It’s important to keep in mind that this is not an inclusive list; there may also be other practices that your healthcare practitioner may discuss with you as they individualize your care.

Please remember that it is always important to speak with your medical practitioner before beginning any new and additional treatment programs.

In Conclusion

Lupus does not just affect the body – it affects the mind and spirit as well. While treating and managing symptoms is a logical first step to improving health, it’s not the only step to addressing overall well-being. It may often take a thinking-outside-the-box approach to care for an individual with lupus holistically – creating harmony throughout the entire being – in order to achieve greater symptom management and maintain a better day-to-day quality of life.

 

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References

Bainbridge, H., & Iman, H. (2015). Alternative and complementary medicine in the treatment of lupus. Retrieved from: https://www.lupusuk.org.uk/medical/gp-guide/treatment-of-lupus/complementary-medicine/
Brady, D., & Patavino, T. (2001). Natural medicine and nutritional therapy as an alternative treatment in systemic lupus erythematosus. Retrieved from: http://archive.foundationalmedicinereview.com/publications/6/5/460.pdf
Definition of naturopathic medicine. (n.d.) Retrieved from: https://www.naturopathic.org/content.asp?contentid=59
Franklyn, K., Lau, C. S, Navarra S.V., Louthrenoo, W., Lateef, A., Hamijoyo, L.,…Morand, E.    (2015). Definition and initial validation of a Lupus Low Disease Activity State (LLDAS). Annals of the Rheumatic Diseases. doi: 10.1136/annrheumdis-2015-207726
Greco, C. M., Nakajima, C.,&  Manzi, S. (2013). Updated review of complementary and alternative medicine treatments for systemic lupus erythematosus. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3898893/pdf/nihms528344.pdf
Katz, R. (n.d.). What are the SLEDAI and BILAG evaluations? Retrieved from: https://www.lupusil.org/what-are-the-sledai-and-bilag-evaluations.html
Southwest functional medicine. (n.d.). Retrieved from: http://southwestfunctionalmedicine.com/

 

Article by: By 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 info@kflupus.org 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 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 medical provider with any specific questions or concerns.

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Article by : Elizabeth 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.