As if you don’t feel bad enough between the fatigue, lupus brain fog and chronic pain, you may also have weight issues to deal with. Whether you have the challenge of keeping the weight on or off, here are some important things to consider!

• Introduction
• What causes weight fluctuations in lupus?
• How can you manage your weight when you have lupus?
• In Conclusion

Introduction

With lupus, changes in weight can sneak up on you, especially if your focus has been more on symptoms of pain, fatigue, and others that can significantly interfere with daily life.  Lupus, and/or the medications that you may be using for treatment, can cause you to add or loose pounds in a way that may come as a surprise.

Before we get into the most common causes of both weight gain and weight loss, it is important to understand that excessive changes in weight can also have an effect on your lupus symptoms.  Though this is an area that needs more research, a 2005 article published in Arthritis & Rheumatism, did provide some insights.  After studying 100 individuals with SLE, it was noted that obese individuals with lupus experienced significantly “worse functional capacity, more fatigue, and higher concentrations of inflammatory markers” and concluded that “weight loss may improve functional capacity and decrease cardiovascular risk factors” in these individuals.

Obesity can be a health risk for anyone, not just those with autoimmune disease. However, this study indicates that for individuals with lupus, who already experience chronic inflammation throughout their bodies, the added “inflammation burden” caused by obesity is significant and even larger than expected.

It’s not just about being obese, however. While gaining excessive weight can negatively impacts health,  conversely, being underweight is not good, either. Both conditions can be indicative of underlying, undiagnosed health issues. Keep reading to find out why your weight may bounce back and forth and what you might be able to do about it.

 

What causes weight fluctuations in lupus?

Your weight can actually fluctuate either way when you have lupus.  While you will always want to speak to your healthcare practitioner about everything you are experiencing, here’s a quick overview of some of the reasons that may account for sudden changes in weight:

Weight Gain

• Race and Gender – Being African-American and being a woman can predispose you not only to lupus, but obesity as well. According to the U.S. Department of Health and Human Services, African-American women have the “highest rates of being over-weight or obese compared to other groups in the U.S.” with four out of five African-American women struggling with their weight.
• Interleukin-6 and C-Reactive Protein – These inflammatory markers which are often present in increased levels in individuals with lupus can also be found in increased levels in obese individuals, particularly males. In a 2004, study published in the Journal of Parenteral and Enteral Nutrition, Harvard Medical School researchers concluded that “obese subjects (BMI ≥ 30 kg/m²), had significantly higher serum levels of…IL-6 [interleukin-6] and CRP [C-Reactive Protein] compared with nonobese subjects.”
• Medications – Corticosteroids which are prescribed to combat inflammation, come with many unwanted side effects – one of the most common and annoying is weight gain due to increased appetite and changes to metabolism. As many people who take corticosteroids know too well, they can also cause a redistribution of fat, making one’s face and/or abdomen appear fuller.
• Lifestyle Changes – When you are not feeling well, you may become more sedentary and therefore prone to gaining weight. You may have once had a very active, athletic life, but now find climbing out of bed stressful and painful. This can create a very bad feedback loop where weight gain and inactivity reinforce each other!
• Stress and Mood – Being stressed, anxious or depressed can cause an increase in cortisol, the “stress hormone.” Cortisol puts your body in “crisis” mode which interferes with normal digestion, and it encourages you body to stubbornly hold on to stored fats as a survival strategy. At the same time, you may also find yourself “stress eating” in order to compensate for how bad you are feeling, and since comfort foods tend to be more fatty, sugary and full of carbs, this adds a lot of empty calories to your diet.
• Changes in Sleep – If your sleep quality is poor, your ability to make sound decisions may be poor. You may eat and drink things that are fast and easy, but unhealthy. You may also find yourself craving unhealthy foods. Your metabolism may also suffer due to the lack of sleep and lack of activity, especially if insomnia makes you too tired to exercise.
• Overlap Diseases – Many individuals with lupus also experience overlap diseases such as nephritis. Nephritis can make it harder for your kidneys to filter toxins and waste.  This may cause swelling and weight gain because your body is unable to properly rid itself of fluid.
• Hypothyroidism – Some individuals with lupus may also experience autoimmune thyroid disease. Hypothyroidism occurs when the thyroid gland is underactive, causing metabolism to slow and weight gain to occur for no apparent reason.

Weight Loss

• Gastrointestinal Problems – University of Maryland researchers found that as many as 45% of individuals with lupus may experience stomach issues such as diarrhea, which may account for weight loss. You may also experience acid reflux and heartburn when you eat. Therefore, in order to avoid that discomfort, you may eat less – resulting in weight loss.
• Hyperthyroidism – Just as you may develop hypothyroidism with lupus, instead you might develop hyperthyroidism. Hyperthyroidism occurs when the thyroid gland is overactive, causing your base metabolism to increase significantly and cause an otherwise unexplained loss in weight.
• Illness – Undiagnosed lupus itself or another illness may account for inexplicable weight loss.  If this loss occurs too quickly and without much effort, it should be a red flag that there may be an underlying problem.
• A Diet That’s Too Restrictive – You may be so focused on eating the right things because you want to feel better that you become too focused – you can have too much of a good thing. Out of extreme caution, you may end up unnecessarily cutting things from your diet that you don’t need to. While there may be some things you legitimately need to avoid, being mindful about your diet does not always mean abstinence – it could just mean moderation.

 

How can you manage your weight when you have lupus?

First and foremost, if you notice any significant and inexplicable changes in your weight, talk to your healthcare practitioner as soon as possible – a pound or two in either direction can quickly add up. Once you’ve worked to identify the cause, your healthcare practitioner can work with you to add weight management options into your treatment plan that will help you manage your symptoms and stay healthy from head to toe.

Diet

Your healthcare practitioner may suggest that you work with a nutritionist who can help you identify foods that work to counteract the side effects of medications, reduce inflammation, maintain healthy blood sugar levels, and provide vitamins and other nutrients.  All of these can help you achieve your weight goals. Along with a variety of food options, nutritionists can also help you build balanced meals and menus and help you find recipes that are not only good for you, but taste great as well. Being on a diet plan doesn’t mean you have to forsake taste! Enjoying what you are eating will help you stick to your plan.

Exercise

While you may not be able to exercise at the same pace you’re accustomed to, you can work with your healthcare practitioner to find options that will still keep you fit and are fun to do. Once you both decide what level of activity is appropriate, you can start exploring exercise programs that fit your personality and meet your fitness needs. You may even choose to work with a personal trainer who has experience working with clients who have lupus or other autoimmune or inflammatory diseases to make sure you are not putting undue stress on your body and overall well-being.

Stress Management

The mind-body connection is just as important to achieving and maintaining healthy weight as much as anything you put in your body. Living a life where you can find moments of joy, happiness and peace will help you make more appropriate, mindful decisions when it comes to exercise and food. Experiencing less stress will also bring those nasty cortisol levels down, help you achieve healthier sleep patterns, and brighten your overall outlook on life. Learning to manage your stress level during times when you are not very stressed will actually help you cope when you are running low on spoons. Mental health is equally as important as physical health.

In Conclusion

We live in a society consumed with appearance and weight. While it is too easy to fall into this trap, if you have lupus it is more important than ever to understand what is and what isn’t a healthy weight.  If you have been gaining or losing weight for no other reason except that you’ve been feeling poorly, that should be a signal to you to talk to your healthcare practitioner. If you’ve actually been losing your appetite, but can’t fit into your favorite jeans – don’t ignore the sign that something may be amiss. Learning to love yourself no matter what you look like also means being honest with yourself and taking action when you know something isn’t quite right.

 

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References

Oeser, A., Chung, C.P., Asanuma, Y., Avalos, I., & Stein, C.M. (2005). Obesity is an independent contributor to functional capacity and inflammation in systemic lupus erythematosus. Arthritis & Rheumatology, 52(11). 3651-3659. Retrieved from: https://onlinelibrary.wiley.com/doi/pdf/10.1002/art.21400

Khaodhiar, L. Ling, P., Blackburn, G.L., & Bistrian, B.R. (2004). Serum levels of interleukin-6 and c-reactive protein correlate with body mass index across the broad range of obesity. Journal of Parenteral and Enteral Nutrition, 28(6). 410-415. Retrieved from: http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.826.4824&rep=rep1&type=pdf

Umare, V., Nadkarni, A., Rajadhyksha, P., Ghosh, K., & Pradhan, V.D.  (2017). Do high sensitivity C-reactive protein and serum interleukin-6 levels correlate with disease activity in systemic lupus erythematosus patients? Journal of Postgraduate Medicine, 63(2). 92-95. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5414434/?report=printable

Herndon, J. (n.d.) Weight loss with lupus. Retrieved from: https://www.livestrong.com/article/517237-weight-loss-with-lupus/

Lupus and kidney disease (lupus nephritis). (2019). Retrieved from: https://www.kidney.org/atoz/content/lupus

Obesity and African Americans (n.d.). Retrieved from: https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlid=25

Ohl, K., & Tenbrock, K. (2011). Inflammatory cytokines in systemic lupus erythematosus. Retrieved from: https://www.hindawi.com/journals/bmri/2011/432595/

Signs, symptoms, and co-occurring conditions. (2019). Retrieved from: https://www.hopkinslupus.org/lupus-info/lupus-signs-symptoms-comorbidities/

Treating lupus with steroids. (2019). Retrieved from: https://www.hopkinslupus.org/lupus-treatment/lupus-medications/steroids/

What is cortisol? (2019). Retrieved from: https://www.hormone.org/hormones-and-health/hormones/cortisol

 

 

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.