The Lupus Book: A Guide for Patients and Their Families, Third Edition (52 page)

Website:
www.lupusresearch.org

Lupus Research Institute,
149 Madison Ave., Suite 205, New York, NY

10016, 212-685-4118, was founded in 2000 to provide funding to novel re-

search and clinical innovation lupus research projects. E-mail: lupus@

lupusresearchinstitute.org Website:
www.lupusresearchinstitute.org

Research and Education Foundation of the American College of Rheuma-

tology.
The research funding arm of the ACR funds rheumatology training

and research programs that are vital to the care of patients suffering from

rheumatic diseases. To find out more about the REF’s programs, go to
www

.rheumatology.org/ref
or call toll-free (800) 346-4753.

Rheuminations, Inc.,
221 East 48th Street. New York, NY 10017, has provided funding for lupus-related research and education to various institutions, including the Hospital for Special Surgery’s LANtern (Lupus Asian Network)

Program and Charla de Lupus Teen Chat Program, and its Barbara Volcker

Center for Women and Rheumatic Disease.

HOW CAN I FIND OUT ABOUT LUPUS SUPPORT OUTSIDE

OF THE UNITED STATES?

The Lupus Foundation of America is associated with approximately 75 inter-

national lupus groups. Call the LFA for information, or go to the LFA website

for an up-to-date list. Some important groups are:

Lupus Resource Materials

[277]

Lupus Canada
(the national organization), 590 Alden Road, Suite 211, Mark-ham, Ontario L3R 8N2 Canada. Phone: 905-513-0004; Toll-free in Canada

1-800-661-1468;

Fax

905-513-9516;

E-mail:

[email protected];

Website:
www.lupuscanada.org

Fundacioń Mexicana de Lupus,
Club de Lupus Centro Medico de Occ., c/o

Dr. J. Humberto Orozco-Medina, Club de Lupus Centro Medico de Occidente,

Pedro Buezeta 870-B, Tavascos 3469-306, 44660 Guadalajara, Jalisco, Mex-

ico. Phone: 523-813-3001; fax: 523-813-3002.

Lupus Potosino A.C. (LUPAC),
c/o Marcela Alcaraz Carranza, presidente,

Cordillera Arakań # 606 local 18, Lomas 4ta seccioń c.p. 78216, San Luis

Potosi, Me´xico. Tele´fonos: (52) 444-8-28-32-74; Fax: (52) 444 8 25 06 04;

E-mail: [email protected]

Panamerican League of Associations for Rheumatology,
4301 West Mark-

ham, Division of Rheumatology, UAMS, Slot 509, Little Rock, AR. E-mail:

[email protected]

European Lupus Erythematosus Federation.
All efforts in Europe are coor-

dinated through a central office of the ELEF. Affiliate groups are located in

Belgium, Finland, France, Germany, Great Britain, Iceland, Ireland, Israel,

Italy, Netherlands, Norway, Portugal, Spain, Sweden, and Switzerland.

E-mail: Tony Bonello, ELEF Secretary, [email protected]; Website:

www.elef-europe.org

HOW CAN I FIND OUT ABOUT ORGANIZATIONS THAT

SERVE PATIENTS WITH LUPUS-RELATED DISORDERS?

Fibromyalgia Network,
P.O. Box 31750, Tucson, AZ 85751, 520-290-5508 or

800-853-2929, supports research through the American Fibromyalgia Syn-

drome Association.
Website:www.fmnetnews.com

Scleroderma Foundation,
12 Kent Way, Suite 101, Byfield MA 01922, 978-

463-5843 (8:30 a.m.–5:00 p.m. ET, Monday–Friday), 800-722-4673. Email:

[email protected]; Website:
www.scleroderma.com

Sjo¨gren’s Syndrome Foundation,
8120 Woodmont Ave., Suite 530, Bethesda

MD 20814. Information requests (voice mail only): 800-475-6473. Website:

www.sjogrens.com

WHAT ARE THE BEST BOOKS ON LUPUS WRITTEN BY

NON-PHYSICIANS?

R. H. Phillips,
Coping with Lupus
(2nd ed.) (New York: Avery/Penguin Putnam, 2001). Written by an eminent psychologist and popular speaker, it is the best

book on the subject. Available from the LFA and in bookstores.

R. H. Phillips,
Successful Living with Lupus: An Action Workbook
(Hicksville, NY: Balance Enterprises, 2000). Learn to improve your emotional and social

well-being, by emphasizing your positive potential. Available from the LFA.

[278]

Lupus Resource Materials

ARE THERE OTHER LUPUS BOOKS WRITTEN BY

PHYSICIANS FOR PATIENTS?

R. G. Lahita and R. H. Phillips,
Lupus: Q&A—Everything You Need to Know
(New York: Avery, 2004). This is the revised and updated version of the

1998 book,
Lupus: Everything You Need to Know
.

R. G. Lahita,
Woman and Autoimmune Disease: The Mysterious Ways Your

Body Betrays Itself
(New York: Regan Books, 2004). Written in the style of a novel, this book details the lives of 15 women and their adventures with

autoimmune disease, with lupus being one of the diseases highlighted. In

addition, the author explains the body’s immune system and how autoimmune

diseases happen.

WHAT ABOUT RHEUMATOLOGY OR LUPUS TEXTBOOKS?

D. J. Wallace and B. H. Hahn,
Dubois’ Lupus Erythematosus
(6th ed.) (Philadelphia: Lippincott, Williams & Wilkins, 2002). The definitive text on the

topic, this book can be ordered by calling 800-882-0483.

R. G. Lahita,
Systemic Lupus Erythematosus
(4th ed.) (San Diego: Academic Press, 2004). Another excellent lupus textbook.

NIAMS,
Lupus: A Patient Care Guide for Nurses and Other Health Profes-

sionals
(Bethesda, MD: National Institutes of Health/NIAMS, 2001). A replacement for Terry Nass’s
Lupus Erythematosus: A Handbook for Nurses

(1985). Books are available at no charge from the AMS Clearinghouse; see

listing above.

The best general rheumatology textbooks:

E. D., Harris Jr, R. C. Budd, G. Firestein, et al.
Kelley’s Textbook of Rheumatology
(7th ed.) (Philadelphia: Elsevier Saunders, 2005).

M. C. Hochberg, A. J. Silman, J. S. Smolen, M. E. Weinblatt and M. H. Weis-

man, editors,
Rheumatology
(2 vols., 3rd ed.) (St. Louis, MO: Mosby, 2003).

J. H. Klippel and L. Crofford, editors, J. H. Stone,
Primer on the Rheumatic
Diseases
(12th ed.) (Atlanta, GA: Arthritis Foundation, 2001).

W. J. Koopman, L. W. Moreland,
Arthritis and Allied Conditions: A Textbook

of Rheumatology
(15th ed.) (Philadelphia: Lippincott Williams & Wilkins, 2004).

W. J. Koopman, D. W. Boulware, and G. R. Heudebert, editors,
Clinical Primer
of Rheumatology
(Philadelphia: Lippincott Williams & Wilkins, 2003).

D. Isenberg, P. J. Maddison, P. Woo, D. Glass, and F. Breedvald,
Oxford Textbook of Rheumatology
(3rd ed.) (New York: Oxford University Press, 2004).

Index

Note: Drugs and medications are listed under their generic chemical names.

Note: Page numbers in
italics
indicate tables and illustrations.

abortion,
249

amenorrhea,
129

acetic acid derivatives,
209

American College of Rheumatology (ACR),
5,

acetominophen,
141, 212–13

7,
170, 241, 267

acetylation,
44, 52

American Fibromyalgia Syndrome Association,

acetylsalicylic acid.
See
aspirin

178

aches,
78–84.
See also
fatigue

American Indians,
13, 256

acitretin,
231

American Lupus Society,
xi

Activities of Daily Living (ADL) evaluation,

Americans with Disabilities Act,
253

191

amoxicillin,
238

acupuncture,
179, 199

ampicillin,
238

acute cutaneous lupus erythematosus.
See

amyloidosis,
175

discoid lupus erythematosus (DLE)

androgens,
127, 128–29

acute lupus pneumonitis (ALP),
89–90

anemia,
17, 65, 71, 152–55, 192

Addison, Thomas,
219

aneurysms,
117

Addison’s disease,
220

anger associated with lupus,
197–98

adhesion molecules,
26, 266

angina pectoris,
95

adolescents with lupus,
168, 204–5.
See also

animal research,
32–33

children with lupus

ankles,
82

adrenal gland,
127,
128,
131, 219–20, 247

ankylosing spondylitis,
175

adrenalin,
222–23

anorexia,
63–64

adrenocorticotropic hormone (ACTH),
131,

antibiotics,
49–50, 149, 240

219–20

antibodies: antibody panels,
66;
antibody

African Americans,
13, 153, 256

response,
20;
anti-idiotypic antibodies,

age of onset for lupus,
12–13,
13,
165–69

266;
and circulating antigens,
31–32;

AIDS and HIV,
175–76

formation of,
19
;
La (SSB) antibodies,

Aladjem, Henrietta,
xi

247;
listed,
32;
Ro (SSA) antibodies,

albumin,
21

244, 247;
types of,
30–31.
See also

alendronate,
241

antinuclear antibodies (ANA);

alfalfa sprouts,
185–86,
187,
205, 258

antiphospholipid antibodies; autoantibodies;

alkylating agents,
225,
228

immune system

alleles,
40, 41

anticonvulsants,
53

allergies,
60, 173, 239–40

antidepressants,
179, 193, 203

alopecia,
72

antidiabetic drugs,
50

alpha globulins,
21

antigenic peptides,
24

alveolar hemorrhage,
234

antigens,
23,
24,
27, 31–32

amantadine,
239

antihistamines,
240

[280]

Index

anti-inflammatory drugs,
149.
See also

ataxia,
106

nonsteroidal anti-inflammatory drugs

atherosclerotic heart disease,
100–101

(NSAIDs)

attitudes of lupus patients,
201–2

anti-leprosy drugs,
231–32

auscultation,
61–62

antimalarial medications: adverse reactions,

autoantibodies: anticardiolipin antibodies,
91,

116–17, 217–18;
best uses for,
215–16;
and

160, 244, 246, 264;
anticitrulline antibodies,

blood clotting problems,
164;
development

174;
anti-DNA antibodies,
29, 43, 67, 264;

of,
214–15;
dosages,
216–17;
future of,
261;

antierythrocyte antibodies,
30;
antiestrogen

and infections,
237;
and inflammation,
89;

antibodies,
132;
antihistone antibodies,
29,

and lupus remission,
259;
and nicotine,
194;

68;
anti-idiotypic antibodies,
266;
anti-La

Plaquenil (hydroxychloroquine),
125–26,

(SSB) antibodies,
30, 67, 248–49;

215–18, 245, 262;
and pregnancy,
245;

antileukocytic antibodies,
30;

research on,
264

antilymphocytic antibodies,
31, 155;

antimetabolites,
228

antineuronal antibodies,
31, 68;

antinuclear antibodies (ANA): and biologics,

antineutrophil antibodies,
30, 68;
antiovarian

264;
discovery of,
255;
false ANA lupus,

antibodies,
132;
antiplatelet antibodies,
30,

172;
tests for,
4, 5, 28–29, 66–67.
See also

31, 157;
antiribosomal P antibodies,
30, 68;

autoantibodies

anti-RNP antibodies,
29, 67;
anti-Ro (SSA)

antiphospholipid antibodies: action on cells,
30;

antibodies,
30, 67, 172, 184, 248–49;
anti-

adverse reactions,
161
;
antiphospholipid

Sm antibodies,
29, 46, 67;
and drug-induced

syndrome,
108–9, 118,
118,
160;
and

lupus,
52;
and inflammation,
26;
sources,
27;

autoimmune adrenalitis,
131;
and birth

tests for,
10;
types,
27–28, 32.
See also

control,
250;
blood tests for,
67–68;
and

antinuclear antibodies (ANA);

clotting problems,
162–63;
importance of,

antiphospholipid antibodies

161;
and patient prognosis,
258, 260;
and

autoimmune diseases: autoimmune adrenalitis,

pregnancy,
246–47;
prevalence in lupus

131;
autoimmune hemolytic anemia (AIHA),

patients,
91;
treating,
163–64

154;
autoimmune (lupoid) hepatitis,
140–41,

anxiety associates with lupus,
197