“Lupus and You: Beyond the Basics” May 1 Post-Program Summary

“Lupus and You: Beyond the Basics” May 1 Post-Program Summary - Part 1

What is the role of vitamin D in the immune system and lupus? What behavior changes may be the result of lupus? How can pain in lupus be managed? These are just a few of the questions answered by three lupus specialists who spoke to patients and their family and friends at the CUNY Graduate Center as part of the S.L.E. Lupus Foundation’s annual Patient Education Series. 

Here are highlights of their presentations for those who could not attend.

Vitamin D Deficiency and Lupus 
Amanda Sammut, MD, Chief of Rheumatology at Harlem Hospital and Assistant Clinical 
Professor of Medicine at Columbia University, College of Physicians and Surgeons

Dr. Sammut reviewed the role of vitamin D in lupus and for overall health. There is still much to be learned about the role of vitamin D and recommended daily levels.

We know that vitamin D is important for skeletal health including the prevention of osteoporosis. About 80% of vitamin D comes from exposure to sunlight. Since people with lupus should avoid direct sun exposure, they need to be careful about becoming vitamin D deficient. Also, the use of some medications such as steroids contributes to vitamin D deficiency. 

Vitamin D is thought to have a role in altering immune system function; however, studies on the role of vitamin D in lupus are limited. In patients with lupus, vitamin D deficiency has been associated with increased disease activity and worsened kidney manifestations, but there is conflicting data. 

Dr. Sammut recommends that people with lupus talk to their doctor about what their optimal level of vitamin D is and whether or not they should take a supplement. She noted that vitamin D3 is preferred over vitamin D2 because it is more efficacious and has a longer shelf life. 

Lupus and Behavior Changes 
Mona Pervil-Ulysse, MD, Chief of Rheumatology at Interfaith Medical Center and 
Attending Physician at NY Methodist Hospital

Dr. Pervil-Ulysse discussed the ways lupus can affect the brain. Problems with thinking or mental health due to lupus are more common among those with active lupus than those without disease activity.

About 25-50% of people with lupus will experience behavior changes due to lupus such as: 

  • sudden sense of confusion
  • cognitive dysfunction (thinking problems)
  • anxiety
  • changes in mood (e.g. depression, irritability, aggression) 
  • psychosis (e.g. paranoia, hallucinations)

A common concern for people with lupus is the experience widely referred to as lupus fog, which is considered a mild cognitive impairment. Other ways lupus can affect thinking includes cognitive slowing (e.g. thinking more slowly), attention problems, memory problems, and problems multitasking.

It is important to tell your rheumatologist if you are experiencing thinking, memory, or behavior changes as it could be a symptom of lupus. Or, it could be a sign of an underlying infection, a neurological or psychiatric condition, a medication side effect, or recent brain trauma. There is no definitive diagnostic testing, so diagnosis is made by ruling out these other possible causes. 

Steroids are commonly prescribed to control the lupus activity causing these symptoms. Other immunosuppressants may be prescribed as well.

Pain Management in Lupus 
Stuart Green, MD, Chief of Rheumatology at The Brooklyn Hospital Center

Dr. Green explained there are several types of pain experiences related to SLE:

  • Joint pain
  • Arthritis
  • Vasculitis-related pain
  • Headaches 
  • Nerve pain
  • Oral ulcers
  • Muscle pain
  • Fibromyalgia-related pain
  • Chest pain due to inflammation around the heart or lungs
  • Avascular necrosis, usually in the hips (due to steroids, antiphospholipid syndrome, Raynaud's syndrome, or vasculitis)

There is a close relationship between pain and inflammation since inflammation, resulting from disease activity, causes much of the SLE-related pain and swelling.

Dr. Green reviewed various strategies people with lupus can try out to manage their pain:

  • Low-impact aerobic exercise can help reduce pain and depression and improve sleep quality. It is important to increase the amount of exercise gradually so one does not cause more pain and fatigue by overdoing it. 
  • Stress reduction, cognitive behavioral approaches, and antidepressants have had beneficial effects on fatigue and pain. 
  • Non-narcotic medications can be helpful:

     o Muscle relaxers help calm muscle spasms, which cause pain
     o Anti-epileptics help reduce pain
     o Anti-anxiety medications are not effective alone, but combined with other non-
        narcotics can be very effective
     o Topical agents can be helpful but require multiple applications, and the pain 
        returns when the applications stop
     o Hypnotics (sleeping pills) help people sleep, which could help reduce pain since there is a relationship between lack of sleep and increased pain

He also reviewed three key studies on headaches, fatigue and sleep as factors that relate to pain.

Headaches and Lupusi

  • Lupus headaches are rare. Most headaches are not associated with increased disease activity. Most go away without any lupus-specific therapies. 


  • Fatigue is reported by over 75% of people with lupus. 
  • Poor sleep correlates with fatigue. 


  • A significant number of women with lupus suffer from poor sleep quality. 
  • Depression, prednisone use and lack of exercise contribute to poor sleep. 

Dr. Green discussed the difficulty in knowing if pain, depression and/or poor sleep contribute to disease activity or if disease activity leads to pain, depression and poor sleep. However, he noted that exercise is known to help reduce pain and depression and improve sleep quality. 

 Talking to your doctor before starting an exercise program is always recommended. Dr. Green also pointed out that a physical therapist can help develop an exercise plan that’s right for you. Watch this excellent talk about how exercise can help and how to do it properly by his colleague at The Brooklyn Hospital Center, physical therapist Beata Nowak. 

What Else Can You Do to Cope?
Learn more about strategies for coping with behavioral changes and pain in these past columns from our Social Worker, Jessica Rowshandel. 

Dealing with Lupus Fog

Does Lupus Cause Depression?

Consider Massage to Help Manage Pain and Stress

i Hanley, J, et. al. Headache in Systemic Lupus Erythematosus: Results From a Prospective, International Inception Cohort Study. Arthritis & Rheumatism, 65 (11) 2013: 2887-2897.

ii Kozora E, Ellison MC, West S, Depression, fatigue, and pain in systemic lupus erythematosus (SLE): relationship to the American College of Rheumatology SLE neuropsychological battery. Arthritis Care & Research, 55 (4) 2006: 628–635.

iiiCosta DD, et. al. Determinants of sleep quality in women with systemic lupus erythematosus. Arthritis Care & Research, 53 (2) 2006: 272-278.