Basics for Better Living
Control Fatigue
Fatigue in lupus is caused by inflammation, anemia (deficiency in the oxygen-carrying materials in the blood), and chemicals known as cytokines, among other sources. In order to help reduce your fatigue:
- Pace yourself with periods of activity alternating with periods of rest.
- Remember: Patients who stay in bed all day only become weaker.
- On the other hand, supermoms and dads who put in a 20-hour day without a break can cause their disease to flare.
Develop A Good Doctor-Patient Relationship
It's very important that your physician is accessible and will take the time to discuss disease management issues. For instance:
- Will your physician tell you if pregnancy is advisable or not, whether or not to take birth control pills, which antibiotics you need to be careful with?
- Will your physician write a jury duty letter or fill out a disability form if needed?
In return, it's vital that you, as the patient:
- prepare for and keep your appointments
- be honest with your physician
- take medication as prescribed
- respect their time.
It would also be helpful to plan ahead and decide what to do in case of an emergency.
Genetic And Prognosis Counseling
- Women with lupus have a 10 percent chance of having a daughter with lupus.
- Women with lupus have a 2 percent chance of having a son with the disease.
- Women with lupus have a 50 percent chance that their children will have a positive ANA.
- 20 percent of patients with non organ-threatening systemic lupus will develop organ-threatening disease, usually within the first five years after diagnosis.
- Patients with non organ-threatening disease have a near normal life expectancy if antiphospholipid antibodies are not present.
- The rate of survival for people with organ-threatening lupus is 75 percent at 15 years, which means that after 15 years with lupus, 75 percent of patients are still living.