Systemic Lupus Erythematosus (SLE)

Today, I thought I would do a post about SLE, Sytemic Lupus Erythematosus or simply just "lupus". Though I have been diagnosed since 2004, but to me, SLE is still a mystery, can't even spell "Erythematosus" without referring to the web.

~~~~~~~~~~~

Now, what can I say about lupus, in my own words?

1. Lupus is an autoimmune disease (like allergies), it can be mild and can also be life-threatening. (YES, cats can have it too ... ).
2. No one knows the cause of lupus, but 90% SLE patients are women.
3. Lupus symptoms can come and go and vary from one patient to another. The bad times (when symptoms get worse) are known flares. The good times (when symptoms are not so bad) are called remissions.
4. Prednisolone (or steroids) are widely used to control lupus. Side-effects of prednisolone are sickening!
5. When you are on prednisolone, you are considered immuno-suppressed, get your husband to clean the cat litter! (I am still trying to convince mine to do so..... )
6. Lupus patients can look quite healthy on the outside (like me) and it is "double sickening" trying to explain to others that I am tired!
7. Stress can trigger a flare, don't die for the company ya? It is not worth it... Go home, relax, take it easy.
8. See a RHEUMATOLOGIST if you suspect you have lupus, or any autoimmune disease. (example of other autoimmune disease is GOUT!)
9. My very first lupus sympton is SWOLLEN FINGERS! I woke up one morning with fingers looking like sausages and they felt stiff and painful. Then, it got to my knees, joints .... and now, my blood!!
10. Oh ya, avoid the sun. Wears lots of sunscreen.
11. Two government hospitals in Malaysia that offer "Rheumatology Clinics" are Putrajaya and Selayang Hospital. They are probably setting up in General Hospital KL too.
12. Hospital Universiti Kebangsaan Malaysia (half private?) provides specialised SLE clinic too.
13. Lupus requires long term medications and management, it can be very costly. If you have lupus, get yourself registered in a government hospital, trust me, you are doing your self a big favour in the long run ... I know, the waiting, and blur blur, grumpy nurses can be a put-off but hey, get your taxes paid worth!
14. One last thing to add, bone marrow biopsy is no fun!
15. Our own local charter for SLE http://www.lupusmalaysia.org/

It is not easy living with lupus. You get very trying days when you just try to sleep it off ... or if you try to work harder, your body tells you that you can't.