Image Source: Whole Health Web
The common FAQs about Lupus and possible solutions to address your concerns and how to look after yourself.
1) There are so many people in this world, why must I be the one who suffering from SLE?
The incidence of lupus is around 3-10 per 100,000 people while the incidence of cancer is around 1 in 10 and while 1 in 3 Malaysians have diabetes, hypertension or cholesterol. There are more people having these chronic diseases than you! Although it is not nice to have lupus, there are people worse off than you.
2) Will I die soon?
80-90% of patients with lupus have a normal lifespan. Although lupus cannot be totally cured, it is not as bad as terminal stage cancer. Causes of premature death associated with lupus are mainly due to active disease, organ failure (kidney), infection, or cardiovascular disease due to poor disease control.
Most of the lupus patients’ condition can be stabilised with a combination of medical treatment, good compliance, regular blood tests, regular exercise and a healthy diet & lifestyle. Research has showed that the benefit of exercise but in moderation. Consult your doctor first and don’t exercise if your joints feel are actively inflamed with swelling, tenderness or pain.
3) Will my family and friends think that I’m troublesome?
Think positive and have a positive outlook. Try not to be depressed or wallow in self-pity as this does not endear you to your friends and family. Good friends and family members will always be by your side. You have to play your part too by taking good care of your self and comply with the doctor’s advice. Everyone wants you to get better.
4) Can I still pursue my dreams?
Sure you can! As long as you want to pursue your dreams, nothing can stop you. As long as you pay attention to your health, you can be whatever you want. Lupus didn’t stop celebrities such as Selena Gomez, Lady Gaga, Seal or Toni Braxton from pursuing their dreams.
5) When can I cut down my medication dosage taking OR totally stop taking any medication?
Every attending physician will have a treatment plan for you. At each medical checkup, the doctor will look at your blood test results and assess your disease activity. You must also do your part and describe to you doctor any changes you have experienced. Based on the doctor’s assessment, he/she may increase or decrease or change your medication.
You must NEVER STOP or CHANGE your medication without your doctor’s consent. Moreover, you MUST ATTEND all the follow-up appointments which can be between 1-4 monthly intervals depending on your condition.
6) Can I marry and have children?
This is the most common question from every female lupus patient. It is not impossible to have children although there is a higher risk of miscarriage and flare-ups during pregnancy. It is advisable to get pregnant only when the lupus is stabilised or in remission. Discuss with your doctor and your gynaecologist before starting a family.
7) Can I take any supplements or Chinese medication?
Everyone’s health condition is not the same and you will hear your friends or relatives giving you advice on miracle cures using certain supplements or Chinese medicine. Discuss with your doctor BEFORE taking any such medication because there may be drug interactions caused by them.
Look after yourself
Image source: Big Think
Take more care of your body if you have lupus by doing the following:
1) See your doctor regularly (even if you have NO symptoms) so that the doctor can monitor the disease activity thereby preventing serious flare-ups.
2) Learn to recognise the signs of a flare-up and inform your doctor asap when this happens.
3) Do NOT ever stop your medication as this will trigger a flare-up.
4) Avoid direct sun light because ultraviolet light can trigger a flare-up. Do wear protective clothing, use sunscreens (SPF at least 45) and wear a hat or umbrella when you go outside.
5) Get regular exercise because it can help keep your bones strong, reduce your risk of heart attack and reduces lethargy.
6) Stop smoking as it increases the risk of cardiovascular disease and vasculitis.
7) Eat a healthy diet rich in fruits, vegetables and whole grains. Avoid too much salt or sugar.
8) Take life more easily and avoid stress as stress can trigger a flare-up.
9) Vitamin D and calcium supplements may help prevent osteoporosis.
10) Reach out to support group volunteers who can provide emotional support to boost your confidence. Most of these volunteers also have lupus and are extremely upbeat about life!
Dr. Benjamin Cheah
Rheumatologist (joints & autoimmune disease)