Lupus & You: Beyond the Basics May 20, 2014 Part 2

Montefiore Medical Center

The S.L.E. Lupus Foundation’s annual Patient Education Series Lupus & You: Beyond the Basics was held in Spanish May 20th at Montefiore Medical Center. If you missed it or are not Spanish-speaking, here are summaries of the three talks by lupus specialists that provide information and suggestions for how to cope with the effects lupus can have on mental health, family planning and body image.

Mental Health Problems and Lupus
Beverly Johnson, MD - Chief of Rheumatology at Jacobi Medical Center and North Central Bronx Hospital

People with lupus can experience feelings of depression and a sense of being in a fog. 

Common symptoms of depression include:

  • Feeling sad
  • Crying
  • Lack of sleep
  • Loss of interest
  • Lack of concentration
  • Lack of appetite
  • Tired, little energy

Coping with Depression
Talk to your doctor if you have these symptoms for more than two weeks.  The doctor may refer you to a psychiatrist or prescribe medication. Dr. Johnson also suggests some things you can do to improve your outlook: eat a balanced diet, exercise, get enough sleep, reduce stress, and join a lupus support group. Click here to learn about support groups offered by the S.L.E. Lupus Foundation.

Dealing with Lupus Fog
According to Dr. Johnson, 21-80% of people with lupus suffer from “Lupus Fog,” with symptoms that include:

  • Difficulty remembering things
  • Problems making decisions
  • Difficulty finding words
  • Changes in personality

Tips to improve your memory:

  • Make a list of things you need to get done
  • Keep a calendar of your appointments
  • Ask family or friends to help you remember things

Dr. Johnson advised talking with your doctor if you are having trouble with your memory.  Here are some ideas on dealing with lupus fog from Jessica Rowshandel, LMSW, Director of Social Services S.L.E. Lupus Foundation.

Family Planning
Barbara Mendez, MD - Rheumatologist and Clinical Educator at Montefiore Medical Center

Dr. Mendez discussed family planning and lupus. For women planning a pregnancy, she advises that you speak to your rheumatologist, seek a high risk obstetrician, and anticipate changes in medications to prevent exposing the fetus to high-risk drugs.  Also, your doctor may recommend taking folic acid, calcium, and prenatal vitamins.

Remember that it’s ideal to have your lupus under control without any flares for at least six months before getting pregnant. Once you are pregnant, it’s very important to keep your appointments with your obstetrician and rheumatologist.  And Dr. Mendez recommends choosing a hospital with an intensive care unit for premature babies just in case complications arise.  Click here for more information about pregnancy with lupus.

Body Image: Appreciation of the Physical Manifestations of Lupus
Irene Blanco, MD - Rheumatologist at Montefiore Medical Center and Assistant Professor in the Department of Medicine, Albert Einstein College of Medicine

Dr. Blanco discussed potential physical effects of lupus and gave suggestions for how to deal with them. 

Physical manifestations of lupus include:

  • Malar rash (butterfly rash)
  • Discoid rash
  • Rashes from photosensitivity
  • Mouth and nose ulcers
  • Hair loss
  • Arthritis

Secondary effects of lupus treatments include:

  • Increased weight, moon face, swollen abdomen, stretch marks
  • Hair loss or hair growth in unwanted areas (mustache)
  • Bone damage (osteoporosis and osteonecrosis)
  • High blood pressure
  • High cholesterol
  • Infections
  • Bruising

Dr. Blanco noted that a poor body image can cause feelings of depression, low self-esteem and isolation from friends and family.  She strongly advises raising this topic with your doctor to get help coping with these negative feelings.  Click here for suggestions from award-winning lupus blogger Sara Gorman on how to talk honestly and openly with your doctor about topics you might rather not discuss or he/she does not raise.