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Published by The Raynaud’s Association, Inc. Raynaud’s Association 2004 Raynaud’s
persons said to have primary Raynaud’s New Medical
Phenomenon &
turally normal but seem to have a height- Advisory Board
ened response to environmental stress. In Digital Ulcers
this “haystack” of a very common com-plaint lies the “needle” of secondary Ray- By Lynn Wunderman
By:
L. Nandini Moorthy, M.D., M.S., Assistant
Chairman
Professor of Pediatric Rheumatology, Department of Pediatrics, UMDNJ-Robert Wood Johnson Medical School, and James R. Seibold, M.D., Professor & Director, UMDNJ Scleroderma Program, New Brunswick, NJ closure in response to cold superimposed comprised of prominent physicians in the creased credibility among a broader audi- gerated redness as blood flow returns to We go by the simple rule
that if the patient can’t tell
if a therapy is working
then it probably isn’t and
something different should
be attempted .
fully regulate the core body temperature Treatment of Raynaud’s phenomenon has for optimum organ function. Due to the the goals of 1) maximizing patient func- ties of individuals with Raynaud’s phe- venting digital ulcers. Inadequate blood tion of ulcers, although poor health of lo- have difficulties with simple tasks like cal skin tissue is also contributory. A pa- Inside This Issue
otherwise healthy but that it was also a ♦ Raynaud’s Phenomenon and
Digital Ulcers
much the same way. An estimated 10% ♦ New Medical Advisory Board
♦ New Q&A Feature
♦ Hot Products
Member Tips
uted by Dr. Thomas Lehman of
channel blocker — the family of Q: My daughter has Raynaud's
frequency of attacks for patients tions she should avoid. Could you b o t t l e : A l u m i n u m C h l o r i d e • Old-Fashioned Wristers - To
A: Since the final step in Ray-
Vitamin B6 - Jim has a friend who
toms. (Editor’s note: Be sure to make your doctor aware if you are taking or plan to use any such sup- plements, as they may interact with other medications or have negative Norvasc - Joyce wrote to tell us that
coma also cause narrowing of blood vessels and may aggravate a sufferer's Raynaud's condition. It is important to note that while over-the-counter drugs which should be avoided by peo- Connections
ple with high blood pressure should also be avoided by Ray- The following members have asked for experiences, interest or contact from • Sympathetic Ear - Josephine would like to correspond with fel- low sufferers. If you’re looking for someone to talk with about your Raynaud’s, please e -mail her directly at • Athletes with Raynaud’s - Angela in Boise, Idaho would like to connect with other athletes who have Raynaud's’ - particu- larly runners. She can be reached at engrwamis- Please submit your questions to: Anyone wishing to connect with other Raynaud’s members, ask questions or lynn@raynauds.org, or use the contact share success stories, send your requests to: Cold Cuts, Raynaud’s Association, form on our web site: www.raynauds.org . Inc., 94 Mercer Avenue, Hartsdale, NY 10530, or e-mail lynn@raynauds.org. Hot Products for Cold Sufferers
f OxyPro Chi Machine - Promises
f Warm Skin - This cream is differ-
f Flat Panel Space Heater - This
f Ugg Muffs - I just received a pre-

f Polartec Fingerless Gloves - I’m
DISCLAIMER: The Raynaud’s Association
does not endorse the drugs, treatments or products reported in this newsletter. Each patient’s needs and experiences may vary. Member tips and product reviews are not clinically-based reports. So please review all treatment options with your doctor and use caution in exploring new products. Polartec, so they’re fleecy comfy and wind-resistant. Available at REI at www.rei.com for $32.00, or call 800-426-4840. Come in black, unisex sizes XS -XL, #702 -174. Please provide code #DNHL106D.
f Silk Toe Sock - Funny to look at,
but oh so warm.These are socks with toes, literally! Made of silk, with a touch of spandex for comfort, and machine washable. Come in solids (cream, navy, red and black) - #913, or striped “rainbow” version (#2301) from the WinterSilks Cata-log. Solids are $10.95; stripes start at $12.95/pair. Call 800-648-7455 or visit www.wintersilks.com. Use source code #W313208. The Lockhorns 2004; reprinted courtesy of Bunny Hoest and King Features. Raynaud’s Phenomenon and Digital Ulcers
well advised to treat their circulation and skin integrity with Treatment Options for Raynaud’s Phenomenon
great care – much the way a diabetic would manage foot care. General
If an ulcer occurs, infection and further tissue damage be- comes the primary treatment agenda. Topical antibiotic creams or systemic antibiotics are necessary, as well as specific guid- ance as to wound dressings. Your health care provider should be informed if the ulcer has redness around its margins; pain is Keep skin soft & pliable with moisturizing creams increasing; there is drainage of pus; or the ulcer appears to be Blood Vessel Calcium channel blockers:
Relaxants
Nifedipine (Adalat, Procardia & others) The Table summarizes current options for treatment. Not all patients need medication. Keeping the central body warm with layered clothing; wearing hats to minimize heat loss through the scalp; careful planning of daily activities to avoid cold ex- posure are three simple recommendations that benefit all. In Block
Angiotensin Receptor Blockers (Losartan) some ways, Raynaud’s severity is under the control of the pa- Angiotensin
Angiotensin Converting Enzyme Inhibitors tient. For example, if a medication is working, that individual Effects
may decide to risk more cold weather activities and thus risk
more actual Raynaud's attacks. Since quality of life is improved Adrenergic
with medication, they are considered beneficial. Blockers
Not all patients respond to all or even any of the current rec- Phosphodi-
ommended treatments. This does not mean that treatments esterase
shouldn’t be tried. We go by the simple rule that if the patient Inhibitors
can’t tell if a therapy is working then it probably isn’t and
something different should be attempted. None of the therapies Blood
should be expected to eliminate all attacks. Success can be de- Thinners
fined as reduced number or severity of attacks, increased toler-
New Therapy
ance of cold, and/or reduction in the occurrence of digital ul- cerations. Some patients do well by treating their Raynaud’s Prostacyclins (Flolan, Remodulin, Iloprost) Reprinted with chart updates by permission of the Juvenile Scleroderma Network, Inc., For Kids’ Sake newsletter, Winter 2003. * Editor’s note: These agents are not FDA approved; some have more evidence
than others that they work for Raynaud’s Phenomenon.
Cold Cuts
Raynaud’s Association, Inc.
94 Mercer Avenue
Hartsdale, NY 10530

♦ Raynaud’s Phenomenon and Digital Ulcers ♦ New Medical Advisory Board ♦ New Q&A Feature ♦ Hot Products

Source: http://www.raynauds.org/support/newsletter/pdf/2004_spring.pdf

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MEMBERSHIP TRACKER This page must be filled out, signed by parents and students, and returned to your section leader before the school year begins. The material below will serve as information needed in case of an emergency. This information letter will also serve as a permission form for your son/daughter to participate in band trips or functions with the Mary G. Montgomery High Schoo

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