The Lupus Book: A Guide for Patients and Their Families, Third Edition (52 page)
Read The Lupus Book: A Guide for Patients and Their Families, Third Edition Online
Authors: Daniel J. Wallace
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:
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:
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:
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:
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).
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
acetylation,
44, 52
American Fibromyalgia Syndrome Association,
acetylsalicylic acid.
See
aspirin
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
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
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),
154;
autoimmune (lupoid) hepatitis,
140–41,
anxiety associates with lupus,
197