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Teresa Fama, M.D., of Central Vermont Medical Center (CVMC) Rheumatology, will be the speaker at this spring’s Educational Meeting at Saint Michael’s College on April 27. This meeting is free and open to all who are interested in learning about new lupus treatments. Following the educational presentation a buffet luncheon will be served, and the Vermont Chapter’s Annual Meeting will be held. Dr. Fama, a member of Central Vermont Rheumatology, will speak about “The New Lupus Drug.” She is a graduate of the University of Vermont (UVM) College of Medicine, certified by the American Board of Internal Medicine and the International Society of Clinical Densitometry. She did her residency in Internal Medicine and fellowship in Rheumatology at Fletcher Allen Health Care (FAHC). All participants are invited to stay for lunch and the Annual Meeting, during which Vermont Chapter Board Members and officers will be elected.
Vol. 30, No. 2 Spring 2013
A newsletter to educate and support those affected by Lupus and find the cure
InsideFrom the Editor's Desk . . . . . . . . . . 2NSB Support . . . . . . . . . . . . . . . . . . 2Strike One For Lupus . . . . . . . . . . . 3President's Note . . . . . . . . . . . . . . . 3Risks of Combining Meds . . . . . . . . 4Meditation, Pain and Stress . . . . . . 4Healthy Recipes . . . . . . . . . . . . . . . . 5Vitamins & Supplements . . . . . . . . 6Membership Invitation . . . . . . . . . . 7Member Services . . . . . . . . . . . . . . 8
April Educational Event And Annual Meeting
Teresa Fama, M.D., will speak April 27.
Directions to Saint Michael’s CollegeFrom north of Burlington, take I-89 south to Exit 16. Follow Route 7 south to Route 15 east. Take Route 15 approximately 1 mile. The col-lege is on the left. Turn left into the first entrance. From south and east of Burlington, take I-89 north to Exit 15. Bear right at the exit and then get into the left lane. At first set of lights, take a left into the college campus. Pass the Ross Sports Center on the right and park in the lot next to the Tarrant Recreation Center, which will be on your right. The meeting will be in the Hall of Fame Room, which is on the left after you enter the building.
Save the Date!September 21, 2013
Annual Walk/Run for Lupus Nowat Oakledge Park, Burlington, VT
2 Living With Lupus
Location:57 South Main Street
Waterbury, VTMailing: PO Box 115Waterbury, VT 05676
802-244-5988 Toll free: 1-877-73LUPUS
Office hours: Volunteers staff the office
virtually every weekday. Leave a phone message anytime.
Board of DirectorsHayley Stone, President
Alfred Letourneau, Vice PresidentMarilyn Cattieu, Secretary
Alfred Letourneau, Acting TreasurerCatherine Flanders
Maria HedinMarlene Hodgdon
Elissa JohnsenChristine MurphyNicole Peterson
Virginia V. Lyons, Honorary
Medical ScientificAdvisory CouncilLin A. Brown, M.D.
Connective Tissue Disease
Sheldon M. Cooper, M.D. Rheumatology
Kathryn Schwarzenberger, M.D.Dermatology
Living With Lupus StaffEditor: Catherine Nelson
Layout: Laura Parette DesignIt is the policy of the Lupus Foundation of America,
Vermont Chapter, to publish articles pertinent to lupus and related diseases. We do not endorse any of the articles published herein, but publish
them for your information. We oppose self-diagno-sis and self-treatment and urge all who read this publication to discuss any concerns regarding diagnosis and treatment with their physicians.
From the Editor’s DeskWe are each responsible for our own health. If you are newly diag-nosed, this may seem like a ridiculous impossibility. But we need to understand our medical conditions, as much as we can, as well as the treatments we use to cope with lupus. Communicating with and trusting our doctors and other caregivers are essential, as well as following their instructions. We hire and fire our doctors. If they do not listen or will not explain in terms we can understand, we need to find others. The Vermont Chapter is here, in part, to provide you with infor-mation about lupus. Ask your doctor questions, and contact the Chapter office for more information. Go to the Lupus Foundation of America website, www.lupus.org, or search for your medications online. If you find material that isn’t in sync with what your doctor has told you, talk to him/her about it. Living with lupus is a continuous process of learning. For some-time our symptoms and treatment may remain on a plateau; we all hope for that. But the nature of the disease (and the human body) is that things change. So we must adjust and learn about new symp-toms and/or new treatments. We must stay knowledgeable about what our bodies are doing and what we are doing to our bodies. Then we can enjoy spring, a time of renewal, mud, and new life. Cathy Nelson
Gratitude for NSB Sponsorshipby Fred Letourneau
A few months ago, I approached an employ-ee of the Northfield Savings Bank (NSB) about sponsoring our newsletter, Living With Lupus. She told me to check the bank's website for information about the bank's policies for donations. With some apprehension, I visited their website but felt encouraged when I read their policy of donating 10% of profits to Vermont community organizations. With
that in mind, I printed out their donation application form, assembled the required documentation and mailed the package to NSB. The bank cer-tainly lived up to its words by agreeing to sponsor the full, annual cost of our newsletter. In the name of the Lupus Foundation of America, Vermont Chapter, Board of Directors and its membership, I wish to express our most sincere gratitude for NSB's faith in our mission: "To educate and support those affected by lupus and find the cure."
President’s NoteThis year is off to a great start. We have some more people willing to volunteer; it is so nice that people are reaching out. It feels like an awakening of our chapter is happening. We have all our event dates set to raise awareness and some money so that we can continue putting it toward research and back into our chapter. April 27 is the Educational Meeting at Saint Michael’s College from 10-2. May 19, the Bowl-a-Thon at Champlain Lanes from 1-3 and, the annual Walk/Run for Lupus Now is September 21 from 9:30-2:30 at Oakledge Park in Burlington. I hope to see everyone at these great events. What a wonderful support team we have that works hard every day to keep our chapter run-ning. Thank you! Hayley Stone President, Vermont Chapter
Strike One For Lupus May 19by Cathy Flanders
Did you know this is the 6th year we have had a bowl-a-thon? Some of our Board Members and their families have had a team every year. From the words of Vice President Fred Letourneau, “I didn’t realize bowling could be so much fun and good exercise too!” Over the years, there have been a variety of skills, but the end result is always the same. People are willing to raise money for lupus research and enjoy themselves while getting exercise. If you know someone who would like to form a team the rules are the same: ask 4 or 5 of your friends to form a team, they are encouraged to raise $200, they get 2 games of bowling, shoe rental, pizza, cookies, soda, and raffles. There will be a large prize for the team who raises the most, as well as other prizes in different categories. Individuals who raise the most over $50 are also eligible for a large prize. It’s lots of fun. Strike One For Lupus is being held May 19th from 1-3 at Champlain Lanes in Shelburne. Preregister by May 15th by calling 1-877-735-8787, emailing [email protected] or going to lupusvt.org.
Team Catchabridges and two other bowlers
Team Gutt-er-Dones
Team Robins
4 Living With Lupus
Ways to spread the word:-T-shirts with the Vermont Chapter logo in
various sizes and colors for $10
-Purple lupus wristband for $1
-Purple ribbon pin for $2
All are available at the Vermont Chapter Office. Contact information on page 2.
Risks of Combining MedsThe February 2013 issue of Arthritis Advisor contains an article regarding the risks of taking more than one medication, a practice which can lead to doubling a dose or creating a potentially harmful interaction. Since lupus can involve many different organ systems and lupus symptoms can vary so widely, many people with lupus take medications for a number of types of symptoms, perhaps putting themselves at risk if they are not knowledgeable and careful. “Combining … medications may bring added relief, but with an added risk of side effects and dangerous drug-drug interactions. Studies suggest that hundred of thousands of Americans experience adverse drug events each year, some of them fatal,” warns Arthritis Advisor. The article gives several examples: Using two of the same class of drugs at the same time can increase the risk of adverse effects. Nonsteroidal anti-inflammatory drugs (NSAIDs) can increase the risk of gastrointestinal bleeding, even more so if more than one are used together or with aspirin. NSAIDs combined with prednisone or prednisolone can increase risk for ulcers. NSAIDs also can raise blood pres-sure, countering the action of drugs taken to keep blood pressure low, or simply raising it in a person with untreated blood pressure. Acetaminophen (Tylenol), taken in high doses, can cause liver toxicity; the risk of this problem is greater because it is found in many other pills, such as over-the-counter (OTC) cold medications. Still other combinations can change the way the body metabolizes the medication. Aspirin taken with methotrexate can increase the level of meth-otrexate, increasing the risk of such side effects as liver disease. The opposite happens when omeprazole (Prilosec) is taken with clopidogrel (Plavix); the Prilosec may inhibit an enzyme that converts Plavix into its active form. Arthritis Advisor advises:• ReadthelabelsonallOTCmedicationsandsupplements,aswellasthesafety instructions that come with your prescriptions.• Keepandupdate a list of all prescriptions andOTCmedications youtake and review the list with your doctor and pharmacist. You can visit a U.S. Food and Drug Administration web site to find a sample record: http://www.fda.gov/downloads/AboutFDA/ReportsManualsForms/Forms/UCM095018.pdf. • Ifyouseemorethanonedoctor,makesureeachoneknowswhattheothers are prescribing.• Usejustonepharmacyandtalktoyourpharmacistsothatheorshecanwarn you of potentially dangerous drug or supplement combinations.
Meditation, Pain and StressThe November/December 2012 issue of Arthritis Today reports that two recent studies showed that people who meditated experienced less pain when undergoing a pain-ful procedure. Brain scans validated the subjective experience. Successful meditation takes practice, but it can be done in as little as five to ten minutes. Arthritis Today suggests two quick methods for meditating:1. For 5 minutes: Do breathing exercises. With eyes closed, relax and focus on each breath in and out. When you’re distracted by some other thought, acknowledge it, as “This is me thinking about work,” let it go, and continue to concentrate on your breathing.2. For 10 minutes: Do mindful walking. Feel each step in your feet and your legs and whatever muscles you use. Notice how your knees move and engage with the rest of your legs. Pay attention to each movement involved in the steps you take. The article also mentions a small study that seems to indicate use of a mantra, such as “om” may reduce inflammation. The 2012 study at the University of California, Los Angeles, reported that a group using a mantra rather than a relax-ation tape had blood markers for reduced inflammation. (Published in Psychoneuroendocrinology).
No Medical Insurance for Prescription Drugs?There is help for people who have no insurance coverage for their prescription medication. If you are one of those people, please contact the Vermont Chapter office by mail, phone or email, and someone will assist you.
Fresh Pea and Dumpling SoupSoup recipe1 pound fresh young peas, shelled (do not substitute frozen or canned)¼ head Romaine or Boston lettuce, finely chopped¼ cup parsley, finely chopped6 cups chicken broth
Combine peas, lettuce, parsley, and chicken broth in a large saucepan. Cook briskly until peas are tender.
Dumpling recipePrepare dumpling batter according to the following recipe and refrigerate.2 tablespoons V.S.S. or margarine1 eggpinch of saltpinch of nutmeg3 to 4 tablespoons flour
Cream the fat until light and fluffy, then add egg and continue creaming well. Add seasonings. Add flour and mix thoroughly. Consistency will be a soft batter.
Drop dumpling batter from a teaspoon into the simmer-ing broth.
Cook from 5 to 8 minutes in the partially covered saucepan. The dumplings will expand and be light and feathery.
YIELD: 5 to 6 servings
Grilled Greek Lamb Chops4 lamb chops, ¾ inch thick, trimmed of fat2 tablespoons lemon juice1 tablespoon minced fresh mint1 teaspoon paprikadash of ground cinnamondash of ground nutmeg1 clove garlic, slicedmint springs (garnish)lemon slices (garnish)
Prick the lamb chops with a sharp fork, then place in a shallow bowl.
In a small bowl, combine the lemon juice, mint, paprika, cinnamon, nutmeg, and garlic and pour over chops, turning them once so that all of the surfaces are cov-ered. Refrigerate several hours or overnight.
Drain the chops. Cook on a grill or broil 5 minutes on each side. Do not overcook. Garnish with mint springs and lemon slices, if desired.
YIELD: 4 servings
Lamb and Vegetable CasseroleFrom The Prudent Diet
2 pounds lamb shanks or shoulder with bone, trimmed and cut into large serving pieces3 ½ cups boiling water1 large onion, coarsely chopped1 clove garlic, whole1 bay leaf8 peppercorns2 teaspoons salt2 tablespoons oil2 tablespoons flour3 medium potatoes, peeled and quartered4 medium carrots, scraped, cut in halves lengthwise6 small white onionschopped parsley
Put meat into a wide flameproof casserole, preferably placing it in a single layer; pour boiling water over meat.Add onion, garlic, bay leaf, peppercorns, and salt. Bring to a boil, cover, and simmer very gently for about 1 hour on top of stove. Remove bay leaf after 30 minutes’ cook-ing time. When just tender, remove meat from broth; trim off any visible fat. Strain broth; remove fat. Preheat oven to 350 F.
Wash and dry casserole. Heat oil in the casserole, add flour, and cook 2 minutes, while stirring. Gradually add 1 ½ cups of reserved broth, while stirring, and bring to a boil. Correct seasoning and remove ½ cup of sauce for later use. Return meat to remaining sauce in casserole (sauce should not quite reach the top of meat). Arrange potatoes, carrots, and onions on top of meat; spoon remaining ½ cup of sauce over vegetables. Cover and heat just to boiling. Transfer to the oven and bake for 40 minutes or until vegetables are tender. Sprinkle with parsley before serving.
YIELD: 4 to 6 servings
Peas and Carrots with GingerFrom The Lose Weight Naturally Cookbook
4 small carrots, cut diagonally into thin slices2 tablespoons chicken stock1 cup peas½ teaspoon grated fresh ginger1 clove garlic, minceddash of ground coriander¼ cup water
In a medium-size saucepan, sauté the carrots in the stock for 5 minutes. Add the peas, ginger, garlic, coriander, and water. Partially cover the pan and when the water boils, turn down heat and steam for 5 to 7 minutes or until the carrots are crisp-tender. Serve hot.
YIELD: 4 servings
6 Living With Lupus
Dangers of Vitamins and SupplementsThe September 2012 issue of Consumer Reports features an article listing ten dangers “that may surprise you.” Read on to see if you are surprised, and, perhaps, learn.
1 . Supplements are not risk-free . During the period from 2007 to mid-April 2012, more than 6,300 reports of serious adverse events related to dietary supplements, i.e. vitamins and herbs, were reported to the FDA. Some symptoms were signs of heart, kidney or liver problems, aches, aller-gic reactions, fatigue, nausea, pains and vomiting. There wee more than 10,300 serious outcomes, including 115 deaths and more than 2,000 hos-pitalizations. Protect yourself by going to www.fda.gov and typing in the name of the supplement you want to try to see if there have been warnings, alerts or recalls of the item. If you think you’re having a bad reaction to a pill, tell your doctor. You can report the problem yourself by calling the FDA at 800-332-1088 or www.fda.gov/medwatch.
2 . Some supplements are really prescription drugs . More than 400 such products have been recalled since 2008, according to the FDA. They may contain the same or similar active ingredients as Viagra, Cialis and Meridia, a weight-loss drug pulled from the market in 2010 because of evidence that linked it to risk of heart attacks and strokes. Still others may contain syn-thetic steroids. They cause the same side effects that one may try to avoid by taking supplements instead of drugs. Protect yourself by using diet and exercise to control your weight. Weight training builds muscles. Consult a doctor regarding sexual prob-lems; you could have an underlying health issue. If you think you’ve bought a product that has prescription drugs not listed on the label, send an email to the FDA at [email protected].
3 . You can overdose on vitamins and minerals . Unless a doctor or other health care provider tells you to take more than the recommended daily requirement of a vitamin or mineral, you probably shouldn’t. Very large doses of fat-soluble vitamins (A,D, E and K) may interfere with certain pre-scription medications. It’s easy to take more than is wise because there are vitamins and minerals in foods, milk, orange juice and many other things we ingest every day. Protect yourself by taking what your doctor advises, checking labels on foods, and checking with your doctor before adding or increasing vitamins and minerals.
4 . You can’t depend on warning labels . With the exception of iron, the FDA doesn’t require warning labels on supplements, anyway. Consumer Reports staff looked at the labels on 233 products in the spring of 2012. They found most of the warning labels were vague. Forty percent warned about taking them if you had an existing medical condition but didn’t specify the condition(s). In particular, St. John’s wort, known to reduce the effectiveness of some drugs, including warfarin (Coumadin) listed that warning in only two out of seventeen instances. Gingko biloba is another supplement that can interfere with blood thinners, but only one such warn-ing was found in their samples. Protect yourself by making your doctor and pharmacist aware of all the drugs and supplements you are taking.
5 . None are proven to cure major diseases . If you find an Internet site with a supplement claiming it can diagnose, treat, prevent or cure lupus (or anything else), get right off that site. In the past decade the Federal Trade
Commission (FTC) has made legal challenges against more than 100 advertised claims. Protect yourself by using reli-able government sites such as www.fda.gov, ods.od.nih.gov (National Institutes of Health’s Office of Dietary Supplements), nccam.nih.gov (National Center for Complementary and Alternative Medicine).
6 . Buy with caution from botani-cas . Stores which sell traditional medicinal plants and other items for physical and spiritual healing are a valuable resource, especially in cer-tain cultural groups. But a Consumer Reports investigator who bought products for common ailments was not warned of any side effects. When the ingredients were tested in the lab, they were found to be of questionable help and safety. Protect yourself by checking with your doctor before taking tra-ditional herbs, making sure you know what they are and where they came from.
7 . Heart and cancer protection: not proven . Calcium supple-ments have recently been shown to increase heart attack risk, while other studies have shown that cal-cium obtained from foods lowers that risk. The theory is that calcium absorbed from food is absorbed more slowly and is, therefore, safer. The evidence of help from omega-3 fish oil pills is unclear at this time. Eating fatty fish twice a week is a better way to go. High doses of antioxidants may increase cancer risk instead of lowering it, accord-ing to the May 12, 2012 issue of the Journal of the National Cancer Institute. So don’t take big doses of vitamin A, C, E or beta-carotene. Eat a healthy diet. Don’t smoke; don’t drink too much.
8 . Guess this commonly reported problem? Choking. True choking, in which the pill actually goes down the windpipe instead of the esopha-gus, is extremely rare. But irritation of the esophagus causing a muscle spasm is more common. Another drink of water will probably solve the problem.
Membership FormNote: All memberships expire on September 30, 2013. Date: ________
Name(s): ______________________________________________________
Address: _______________________________________________________
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Are you willing to have your name and photo printed in the "Living With Lupus" Chapter newsletter? _______
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Dr.'s address:___________________________________________________
Please choose your type of membership. All membership information is strictly confidential.
❑ Single: $25
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❑ Good Samaritan $50: Single membership for yourself and someone who is unable to afford it.
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Mail to: LFA, Vermont Chapter
P.O. Box 115, Waterbury, VT 05676-0115.
Make checks payable to: LFA, Vermont Chapter. Please do not send cash.
Protect yourself by taking a drink of water first, putting the pill on the front of your tongue, tipping your head back slightly, taking a sip of water and swallowing. Then drink some more to help the pill down.
9 . Some “natural” products are not . Synthetic vitamins produced in a lab are legal and can even have an “organic” seal from the Department of Agriculture. However, a pill labeled “botanical” means it must have been made from a living plant. Some ingredients are in a gray area being investigated by the FDA. Protect yourself by looking for the “USP Verified” mark on products. It means they meet the standards set by the nonprofit U.S. Pharmacopeia. Lean more at USPVerified.org.
10 . You may not need supple-ments at all . If you’re getting the recommended amounts of nutri-ents by eating a healthy diet, there may be little benefit from taking supplements. Vitamin A is found in eggs, liver and milk. Vegetarians can get it from dark green leafy vegetables and orange and yel-low fruits. B vitamins are plentiful in most people’s diets. Vegetarians may need a supplement, and a small percentage of people over 50 lack sufficient stomach acid to obtain it from their food. Vitamin C (200 milligrams) may be helpful to smokers and seniors who have colds, although it does not prevent colds. Vitamin D can be supplied by exposure to midday sun in warmer months and by fatty fish, eggs, and fortified dairy products. If you’re not sure about your need for a supple-ment, ask your doctor for a blood test. Vitamin E may inhibit blood clotting, so don’t take it with blood thinners; it has also been linked to an increase in mortality in two stud-ies. Multivitamins have repeatedly been shown, in studies, to have no improvement in the health of the average person. People with medi-cal conditions that affect digestion or food absorption and people con-suming fewer than 1200 calories per day may need them.
PO Box 115Waterbury, VT 05676-0115
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Waterbury, VT05676
Member Services•FourissuesannuallyoftheChapternewsletter,“LivingWithLupus”•Threeissuesannuallyofthenationalmagazine,“LupusNow”•LendingLibrary,booksforsale,LFApamphletsandnewsletter articles located at the Chapter Office 802-244-5988•SupportChats:ContacttheChapterofficefordetails
Our MissionTo educate and support those affected by lupus and find the cure.
Foundation Goals•Topromotepublicawarenessandunderstandingoflupusandthe problems caused by the disease.•Topromoteinpeoplewhohavelupusanunderstandingoftheir condition and to provide moral support and encouragement.•Topromoteservicesthatwillbenefitpeoplewhohavelupus.•Topromotelupusresearchwhichwillleadtobetterandearlier diagnosis and treatment for people with lupus and which will eventually result in finding the cause and a cure for lupus.
Lupus Website!The LFA, Vermont Chapter’s
website is up and running. Visit us at
www.lupusvt.org! Find out what we’re doing
and what you can do to help.
Have you visited the Lupus Foundation of America’s
website recently? Go to www.lupus.org
to get information about lupus and national events
as well as find links to local Chapters, like ours.
Educational Meeting April 27
Bowl-a-Thon May 19!Thanks
We are grateful to Northfield Savings Bank for its generous sponsorship of Living with Lupus
and to Green Mountain Coffee for printing it.
