Living Well With Lupus FACTS

Living Well With Lupus

FACTS

Acknowledgements

This booklet represents a compilation of information from the "Living Well with Lupus" brochure and the 22 "Lupus Fact" Sheets produced by Lupus Canada under the Ontario Trillium Foundation Grant working with both Ontario provincial Lupus organizations in 2008.

Working together to conquer lupus

The initial printing was funded by Lupus Ontario in 2009 in honour of their thirty years serving the Lupus Community. The second revised version was printed with monies from the Ontario Trillium Foundation Grant. This 3rd revision is supported by SCA, with the brand TENA and Surgo Surgical Supply who funded and printed the booklet. We would like to acknowledge the support and review of Dr. Sasha Bernatsky to ensure the update and accuracy of the medical content. Additionally, our thanks are extended to the Lupus Canada Trillium Advisory Group, chaired by Cheryl Magnusson, who spearheaded the original Fact Sheet project. The committee included Pamela Bowes, Anne Cymet, Jaclyn Law, Shelly Michano, Denise Mehta, Marketa Myatt and Erin Woodbeck.

LUPUS ONTARIO

Disclaimer: Lupus Ontario does not offer medical service or advice. The material found in this booklet is intended for educational and informational purposes only. Patients are urged to contact their physician or healthcare professional with any questions or concerns they may have.

This booklet is dedicated to Julia Kane, Past President, Lupus Ontario in appreciation for her dedication and compassion in helping those with lupus live longer and better. Her commitment has proven that with proper care and the understanding of lupus; one can live a long and healthy lifestyle.

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Table of Contents

INTRODUCTION What is lupus? .................................................................................. 6 Who gets lupus? ............................................................................... 6 What causes lupus?.......................................................................... 6 What are the symptoms of lupus?..................................................... 6 Living with lupus: what to expect....................................................... 7 What about treatment for lupus?....................................................... 7 What can I do to live well with lupus?................................................ 7 What is happening in research?........................................................ 8 Where to find out more about lupus? ................................................ 8

BLOOD DISORDERS IN LUPUS AND LAB TESTS THAT DETECT THEM Components of the blood .................................................................. 9 Anemia.............................................................................................. 9 Leukopenia ....................................................................................... 9 Thrombocytopenia .......................................................................... 10 Blood Tests ..................................................................................... 10 Antinuclear antibody (ANA) ................................................ 10 Anti-Sm.............................................................................. 10 Anti-nDNA.......................................................................... 10 Anti-Ro and Anti-La ........................................................... 10 Complement ...................................................................... 10 Antiphospholipid antibodies and lupus anticoagulant ........ 10 Test for kidney disease ................................................................... 11 Urinalysis ........................................................................... 11 Serum Creatinine............................................................... 11 24-hour urine collection ..................................................... 11

CARDIOVASCULAR DISEASE AND LUPUS The lupus-heart connection............................................................. 11 Change what you can ..................................................................... 12 What you can't change.................................................................... 13

INFECTIONS IMMUNIZATIONS AND LUPUS Why the increased risk of infection ................................................. 15 Types of infection ............................................................................ 15 Is it a lupus flare or an infection? .................................................... 16 Preventing infections....................................................................... 16 Immunizations ................................................................................. 16 Pneumococcal infections ................................................................ 17 Hemophilus influenza type B and meningococcal vaccine.............. 17 Hepatitis B vaccine ......................................................................... 17 Immunizations and travel ................................................................ 18

INTRODUCTION TO SKIN DISEASES Acute Cutaneous Lupus Erythematosus (ACLE) ............................ 18 Characteristics of ACLE ............................................................. 18 Causes and long-term effects .................................................... 18 Subacute Cutaneous Lupus Erythematosus (SCLE) ...................... 18

Characteristics of SCLE ........................................................................... 18 Causes and long-term effects ................................................... 19

Discoid Lupus Erythematosus (DLE) ....................................................... 19 Characteristics of DLE ............................................................... 19 Causes and long-term effects .................................................... 19

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Treatments ...................................................................................... 19

KIDNEY DISEASE AND LUPUS How lupus affects the kidneys......................................................... 20 Symptoms of kidney involvement in lupus ...................................... 20 Diagnosing kidney disease.............................................................. 21 Treatment for Lupus Nephritis......................................................... 21

MEN AND LUPUS Drug-induced lupus (DILE).............................................................. 22 Diagnosing men with lupus ............................................................. 22 Hormones and SLE......................................................................... 23 Why do some men get lupus?......................................................... 23 Will my children be at risk of lupus if I am a male with lupus?......... 23 Are there special treatments that men with lupus should have? ..... 23 Staying healthy................................................................................ 23

NUTRITION, DIET AND LUPUS Well balanced is best ...................................................................... 25 Weight control, hunger management and portion sizes .................. 26 Corticosteroids and nutrition............................................................ 27

OSTEOPOROSIS AND LUPUS What is osteoporosis?..................................................................... 28 What is the link between lupus and osteoporosis............................ 28 Warning signs ................................................................................. 29 Early detection is key ...................................................................... 29 Prevention ....................................................................................... 30 Medication....................................................................................... 31

PHOTOSENSITIVITY, SUN SAFETY AND LUPUS Why are people with lupus photosensitive? .................................... 32 What kind of skin problems could occur? ........................................ 32 How to protect yourself from the sun............................................... 32

PREGNANCY AND LUPUS Lupus flare ...................................................................................... 34 Neonatal lupus ................................................................................ 34 Other possible complications .......................................................... 35 Breastfeeding .................................................................................. 35 Rheumatology drugs considered safe in pregnancy ....................... 36

LUPUS IN CHILDREN Does lupus occur in childhood ........................................................ 37 Treatments Available ...................................................................... 37

SYMPTOMS OF DRUG-INDUCED LUPUS Symptoms of drug-induced lupus.................................................... 38 Laboratory testing ........................................................................... 39 Drug-induced lupus and SLE .......................................................... 39 Treatment of drug-induced lupus .................................................... 39

THE NERVOUS SYSTEM AND LUPUS Understanding your nervous system ............................................... 40 Important neurological syndromes seen in lupus ............................ 41 Cerebrovascular accidents (strokes) ............................................... 41

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Table of Contents

Lupus headache ............................................................................. 42 Mood disorders ............................................................................... 42 OTHER CONDITIONS SEEN IN LUPUS Raynaud's phenomenon ................................................................. 43 Sj?gren's syndrome ........................................................................ 44 Gastrointestinal conditions .............................................................. 46 LUPUS MEDICATIONS An introduction to corticosteroids and anti-malarial drugs............... 46 Immunosuppressive drugs used in treating lupus ........................... 50 Non-steroidal anti-inflammatory drugs ............................................ 53 LEARNING TO LIVE WELL WITH LUPUS Balancing act; lupus, activity and rest ............................................. 55 Preventative coping strategies for emotional health........................ 59 Preventative coping strategies for physical health .......................... 61 TALKING ABOUT LUPUS Reaching out................................................................................... 64 How to tell ....................................................................................... 64 At work ............................................................................................ 65 At School......................................................................................... 66 Insurance ........................................................................................ 66 LUPUS RESEARCH Finding out about current research ................................................. 68 Lupus Research Studies ................................................................. 68 Enrolling in a Clinical Study............................................................. 69 PROVINCIAL MEMBER ORGANIZATIONS AND DIVISIONS ............... 73

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