Living with Lupus
26. I was diagnosed with systemic lupus. Are there any do's or don'ts with regard to:
Diet - There is no such thing as a lupus diet. People with lupus should consider following a diet such as the American Heart Association's diet or the American Cancer Society diet. These are both well-researched diets that have common components, they are low in fat, low in sodium, high in fiber, low in refined sugars. They are also balanced and include appropriate amounts of all the different food groups. If you find, however, that certain foods seem to aggravate or consistently cause a flare-up of your lupus symptoms, you should certainly avoid eating those foods.
Alfalfa sprouts are in the legume family and contain an amino acid, L-canavanine. It can stimulate the immune system in people with lupus and increase inflammation. Other legumes are safe to eat as they have a much lower concentration of L-canavanine compared to alfalfa sprouts. Check labels on health food packaging as alfalfa may also be found as an ingredient in food products.
See: Lupus: Basics for Better Living
Vitamins - In general, a multi-vitamin is reasonable, but excess vitamins can be potentially dangerous and should be avoided.
Exercise - Exercise is to be encouraged in people with lupus, particularly during a time when lupus symptoms are not pronounced. Walking, swimming, bicycling and other aerobic activities are good. But keep in mind that you want to exercise in moderation and avoid exercising to the point of exhaustion. Regular exercise will help you function better and improve fatigue and your sense of well being.
National Institute of Arthritis and Musculoskeletal and Skin Diseases: "Patient Information Sheet #3, Exercise and Lupus"
"Questions and Answers about Arthritis and Exercise"
American College of Rheumatology:
"A Fact Sheet on Exercise and Arthritis"
Fatigue - When your lupus is active, you very often will suffer with fatigue. It is important to recognize this as a signal that your body needs to rest. It is essential that during a time of flare you get sufficient rest. This may include naps during the day, modifying your schedule as well as restructuring your priorities. Adjusting to fatigue often requires that you learn how to pace yourself in order to accomplish the things you want to accomplish throughout a day. Regular aerobic exercise that achieves enhanced physical conditioning, usually helps fatigue. Avoid strenuous exercise if you have fever or other signs of VERY active disease.
Sleep - Get plenty of it, but keep in mind that when you are coming out of a flare you do need to gradually resume your normal activities slowly over a period of time. This may require naps during the day-a brief cat nap can be of tremendous help. It's important to get enough sleep at night and to pace yourself during the day so you don't exhaust yourself.
Medications - Be sure and take your medications as prescribed by your doctor. If you develop any side effects make sure you let your doctor know what they are. Make it a point to understand what the medication you take is supposed to do so you will be able to recognize if it is indeed working. Also, ask how long before you should see the effects of the medication and if you find it's not working within the time frame, let your doctor know.
Work schedule -The type of work schedule someone with lupus can accommodate is variable. Many people with lupus are able to work a full-time job, others find they have to cut back to part-time. Some people find they are unable to work and some apply for and receive disability.
How can I tell if my lupus is active?
When a lupus flare occurs, people will usually notice a return of the symptoms they experienced previously, but sometimes they will notice new symptoms. These may include, but are not limited to:
When should I call the Doctor?
You should call the doctor about any change in symptoms or worsening of your lupus as soon as possible. You should also be aware that there are certain symptoms that may require that you see your doctor immediately. These symptoms or signs include the following:
- Blood in your stool or vomit -you should call your doctor and let him/her know immediately
- Severe abdominal pain
- Chest pain
- New onset of a fever or if your fever is much higher than it usually is
- Excess bruising or bleeding anywhere on your body
- Confusion or mood changes
- A combination of symptoms such as severe headache with neck stiffness and fever. This combination could be serious and you need to let your doctor know immediately.
There are other reasons why you should call your doctor. For example, if the doctor has put you on a new medication and you've been taking it as prescribed, and for the period of time prescribed and your symptoms are no better or they are worse, you need to let the doctor know.
How long will a flare last? How long will a remission last?
There is no way of predicting how long a flare will last when it comes, nor is there any way of predicting how long a remission will last when it comes. It is frequently said about lupus that the only thing that is predictable about lupus is it's unpredictability. So we have no way of forecasting how long a flare will last or how long a remission will last. Sometimes changes in symptoms or lab tests predict future changes.
I've had lupus for 2 years and haven't had a remission yet. Is this possible?
Yes. Lupus takes a highly variable course. Some people will have a course where their lupus flares-up and then simmers down and goes into remission. On the other hand, some have a more chronic (long-lasting) course where they have a chronic state of flare and have symptoms day-in and day-out.
28. What can I expect in the future? Will I be able to have a family?
Unless there is moderate to severe organ involvement or if a person must take immunosuppressive/immunomodulating medications that would place the mother at risk, there is no absolute reason why a person with lupus should not get pregnant. You must be aware, however, that there is an increased risk of disease activity either during or three to four weeks after pregnancy and, therefore, all women with lupus who are pregnant must be closely monitored by an obstetrician who is thoroughly familiar with high risk pregnancy as well as their lupus doctor. Statistically, 50% of all lupus pregnancies are completely normal, 25% will deliver normal babies prematurely and the remaining 25% will experience either a miscarriage or a fetal death.
Years ago women with lupus were advised not to have children. However, today with the advances in diagnosis and treatment of lupus, unless there is moderate to severe organ involvement, there is no absolute reason why a person with lupus should not get pregnant.
See: Pregnancy and Lupus
Will I be able to continue working full-time?
Many people who have lupus are able to continue working full-time. However, since lupus affects people to varying degrees there is no real way of predicting what your course of lupus will bring in the future. Some find they have to cut back to part-time or try modifications of their work environment or schedule, some find they have to take a leave of absence for a period of time, others may find their lupus activity is such that they are unable to continue with working, and some may go on disability.
Will I live long enough to see my children grow up?
The majority of people living with lupus today, in fact 80-90% of them, can expect to live a normal lifespan.
Will I become crippled and end up in a wheelchair?
People are frequently concerned that the arthritis associated with lupus will result in crippling deformities. Lupus arthritis generally does not cause deformities of the joints. Occasionally, avascular necrosis of bone, related to steroids and lupus, may occur and require total hip or knee replacement surgery.
Reference: see brochure, Joint and Muscle Pain in Lupus
29. Is there anything I can do to alleviate the pain when the pills don't seem to work and I can't get in to see the doctor for a few days?
Some people find relief from heat, some people find relief from cold. Others find that if they can find a distraction to decrease their awareness of pain, this is beneficial.
See: LUPUS: Basics for Better Living; "Control Your Pain: 144 Sure-Fire Strategies for Reducing the Pain of Lupus," by Robert H. Phillips, Ph.D. Available through the LFA Store.
30. I have heard that dental fillings may trigger lupus. Is there anything to this?
At the present time, we do not have any scientific data that indicates that dental fillings may act as a trigger of lupus. In fact, it is highly unlikely that dental fillings aggravate or cause SLE.
31. I have heard that hair dyes may trigger flares in lupus. Does this mean I should stop dying my hair?
One study indicated an association between the use of hair dyes and lupus symptoms, but subsequent studies found no association and no recent evidence has been reported. The initial study findings are of uncertain significance and most physicians do not feel that hair dye is risky for people with lupus.
32. Can lupus cause memory problems?
At some point during the course of their lupus, up to 50% of lupus patients describe feelings of confusion, fatigue, memory impairment, and difficulty expressing their thoughts. This collection of symptoms is called "cognitive dysfunction" and is found in people with mild to moderately active SLE.
See: Systemic Lupus and the Nervous System