From the Archives - Fall 2008 Issue of Lupus Now
Q. In 2005, I was told I have lupus. Now I’m having trouble with my vision and walking. Is that common with lupus?
A. Trouble with vision and walking is not a common problem with lupus, but multiple causes must be considered. If the problem is mild and intermittent, causes other than lupus must be reviewed. It is important that you discuss all of your medications with your physician.
Chorea, a movement disorder, occurs in 1 to 4 percent of people with lupus and may cause difficulty walking. If your problems with walking and vision become progressive, one must consider Devic’s Syndrome, a combination of optic neuritis and transverse myelitis. This combination is linked with both lupus and multiple sclerosis and is caused by a breakdown of the fatty layer covering the spinal cord and major nerve to the eye. Treatment, if the syndrome is progressive, involves corticosteroids, intravenous gamma globulin, and/or immunosuppressive/biological therapy. Most people recover with minor residual defects given timely treatment, but you must see a physician familiar with the syndrome and your individual case.—C. Michael Neuwelt, M.D.
Q. My 11-year-old daughter was diagnosed with lupus when she was 9 years old. I feel I should do everything I can to find her a good doctor familiar with lupus. I would really like to find someone who understands that my daughter is 11 right now and, at her age, is still trying to be a normal kid.
A. Finding the right doctor for your child is always an important issue. While lupus may be the same disease in children and adults, the issues involved in helping children and their families cope with lupus are very different.
In addition, some physicians are very aggressive in their treatment of children and use all the latest therapies, while others prefer a more conservative approach. This requires a special level of familiarity with lupus and the medications. Each family will need to make their own decision as to which type of physician they choose. Those of us who are more aggressive think it is very important to do everything possible to minimize lupus in children so they don’t have to suffer the consequences of corticosteroids on a growing body.
Talk to your child’s physician and discuss whether they are taking an aggressive or conservative approach and decide which is right for your child. If you don’t think they are taking the approach you prefer, then you must ask if they can adjust to your choice. If not, you should seek a doctor who matches your wishes.
When you are the parent of a child with a disease like lupus, try to remember to treat your daughter or son like a normal child every possible minute that you can. This should be part of what you look for in a pediatrician, too.—Thomas J. A. Lehman, M.D.
Q. Can a person with lupus donate blood?
A. You should not donate blood if you are too anemic (a low red blood cell count), so the first step is to discuss this issue with your doctor.
Each blood donation service will have its own guidelines for who is eligible to donate blood. For example, a lupus diagnosis used to be a disqualifier for the American Red Cross, but this is no longer the case. The Red Cross will now allow those with lupus to donate, even while taking such medications as Plaquenil® or corticosteroids. The National Institutes of Health will not accept blood donations from those with lupus. Its reasoning is that without a full understanding of the causes of lupus and the role of antibodies, it cannot ensure that there is absolutely no risk of transmission of harmful elements to those receiving the blood.
In fact, since blood components are separated, the only components in a person’s blood that might be problematic are plasma and antibodies. Red blood cells or platelets should be safe to donate as long as the donor has sufficient amounts for themselves, and these are the parts of the blood most often needed by people who receive blood.—Joan T. Merrill, M.D.
Guest Experts
Thomas J. A. Lehman, M.D., is chief of the Division of Pediatric Rheumatology at the Hospital for Special Surgery and professor of clinical pediatrics at Weill Medical Center, Cornell University, New York, NY. He is a member of the LFA’s Medical-Scientific Advisory Council.
Joan T. Merrill, M.D., is head of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation in Oklahoma City. She also serves as the LFA medical director.
C. Michael Neuwelt, M.D., has 28 years of rheumatology experience in private practice, teaching, and clinical research. His current areas of interest include systemic lupus and neuropsychiatric lupus. He has published abstracts and papers on the use of Cytoxan, plasmapheresis, and rituximab in the treatment of severe, progressive central nervous system lupus. He serves on the Lupus Now Advisory Board.