PtEd – SYSTEMIC LUPUS ERYTHEMATOSUS (SLE)

SYSTEMIC LUPUS ERYTHEMATOSUS (SLE) PROBLEM You have been diagnosed with a condition called lupus. Lupus is a chronic, inflammatory, autoimmune disorder. There is currently no cure for lupus; however, it can be managed and can go into remission or a dormant state. Rashes, hair loss, arthritis-like joint pain, and fatigue are very common problems with lupus. CAUSE Lupus causes your body to attack its own cells. The exact cause is unknown. Lupus tends to run in families, but it is not contagious. PREVENTION There is no known prevention, only long-term management. TREATMENT PLAN A.Avoid sun exposure: 1.Many lupus patients’ eyes are sensitive to light; wear sunglasses and avoid direct exposure. 2.Light exposure can make your rash worse. 3.Apply a protective lotion or sunscreen to your skin while outside. 4.Wear long sleeves and use hats. B.You may be given steroids for your skin rashes or lesions. C.Avoid exposure to drugs and chemicals. D.Review all of your medications and over-the-counter drugs with your healthcare provider. E.Avoid hair sprays and hair-coloring agents. F.Mouth ulcers may occur with lupus: 1.Avoid hot or spicy foods that might cause irritation to ulcers. 2.Use good oral hygiene: a.Get regular dental exams. b.Floss your teeth daily. c.Brush your teeth at least twice a day. G.Drugs called nonsteroidal anti-inflammatory drugs (NSAIDs) are used for minor joint pain. H.If treated with hydroxychloroquine, it is very important for you to have your eyes examined within a year of starting treatment, which includes fundus exam, visual field testing, and spectral domain optical coherence tomography (SD-OCT). I.Talk to your healthcare provider if you are planning a pregnancy. Activity: You may get tired more easily; plan rest periods. However, you should still get some exercise as tolerated. Many people gain some weight from steroids. Diet: Eat a regular diet as tolerated; you do not need any special foods. Medications: You Have Been Prescribed the Following Steroid: ___________________________________________________________ You Need to Take: ___________________________________________________________ A.Do not stop taking your steroid abruptly. B.Steroid medication should be tapered off (decreased until you are off of it). You Need to Notify the Office If: A.You are unable to tolerate your medication. B.You have any sign of infections, sinusitis, bronchitis, flu, urinary tract infections, and so forth. C.You are getting worse or do not feel better. D.You are planning a pregnancy or think you are pregnant. E.Other: ___________________________________________________________ Phone: ____________________________ RESOURCES Lupus Foundation of America: 800-558-0121 or www.lupus.org Lupus Research Alliance: www.lupusresearch.org 212-218-2840 info@lupusresearch.org

SYSTEMIC LUPUS ERYTHEMATOSUS (SLE)

PROBLEM

You have been diagnosed with a condition called lupus. Lupus is a chronic, inflammatory, autoimmune disorder. There is currently no cure for lupus; however, it can be managed and can go into remission or a dormant state. Rashes, hair loss, arthritis-like joint pain, and fatigue are very common problems with lupus.

CAUSE

Lupus causes your body to attack its own cells. The exact cause is unknown. Lupus tends to run in families, but it is not contagious.

PREVENTION

There is no known prevention, only long-term management.

TREATMENT PLAN

A.Avoid sun exposure:

1.Many lupus patients’ eyes are sensitive to light; wear sunglasses and avoid direct exposure.

2.Light exposure can make your rash worse.

3.Apply a protective lotion or sunscreen to your skin while outside.

4.Wear long sleeves and use hats.

B.You may be given steroids for your skin rashes or lesions.

C.Avoid exposure to drugs and chemicals.

D.Review all of your medications and over-the-counter drugs with your healthcare provider.

E.Avoid hair sprays and hair-coloring agents.

F.Mouth ulcers may occur with lupus:

1.Avoid hot or spicy foods that might cause irritation to ulcers.

2.Use good oral hygiene:

a.Get regular dental exams.

b.Floss your teeth daily.

c.Brush your teeth at least twice a day.

G.Drugs called nonsteroidal anti-inflammatory drugs (NSAIDs) are used for minor joint pain.

H.If treated with hydroxychloroquine, it is very important for you to have your eyes examined within a year of starting treatment, which includes fundus exam, visual field testing, and spectral domain optical coherence tomography (SD-OCT).

I.Talk to your healthcare provider if you are planning a pregnancy.

Activity: You may get tired more easily; plan rest periods. However, you should still get some exercise as tolerated. Many people gain some weight from steroids.

Diet: Eat a regular diet as tolerated; you do not need any special foods.

Medications:

You Have Been Prescribed the Following Steroid: ___________________________________________________________

You Need to Take: ___________________________________________________________

A.Do not stop taking your steroid abruptly.

B.Steroid medication should be tapered off (decreased until you are off of it).

You Need to Notify the Office If:

A.You are unable to tolerate your medication.

B.You have any sign of infections, sinusitis, bronchitis, flu, urinary tract infections, and so forth.

C.You are getting worse or do not feel better.

D.You are planning a pregnancy or think you are pregnant.

E.Other: ___________________________________________________________