Lupus Events in Los Angeles, California

It is truly such an exciting time in Los Angeles with so many events coming up and I am so sorry for not posting before but here are the next three event that will be marking the Lupus Weekend in November!!! Hope to see some of you there and if you will come out send me a message so I know that I will be seeing you there 😀

1385184_10151707321925920_849688283_a-1http://www.ethnocares.org/

Lupushttp://mypurplerose.org/

 

Unknownhttp://www.lupusresearch.org/

Los Angeles Walk with Us 2013

WALK DAY INFORMATION

           November 16, 2013

***NEW LOCATION***

Rose Bowl Stadium in Pasadena

1001 Rose Bowl Dr Pasadena, CA 91103

Registration: 9am

Walk Start: 10am

Steroid-Related Risk of Heart Disease in Lupus

Incidence of and risk factors for adverse cardiovascular events among patients with systemic lupus erythematosus
Magder LS and Petri M. American Journal of Epidemiology. 2012. Sept 27. doi: 10.1093/aje/kws130. [Epub ahead of print]

 

What is the topic?

Individuals with lupus are at increased risk of heart disease. However, it is unclear whether this increased risk is mediated by traditional risk factors (smoking, gender, and age, for example), or factors related to the disease itself or its current or past treatments.

What did the researchers hope to learn?

The researchers hoped to learn which of the above risk factors for heart disease in lupus is most influential.

Who was studied?

Over 1,800 individuals who were enrolled in the Hopkins Lupus Cohort from April 1987 to June 2010 were eligible for inclusion in the study. Patients who had a heart disease-related event prior to entry into the Hopkins Lupus Cohort were excluded from the analysis.

How was the study conducted?

Upon enrollment in the study, the participants underwent a comprehensive evaluation of medical history, including date of lupus diagnosis, and information about drug treatments and prior heart disease-related events. During quarterly clinic visits, participants underwent a battery of physical and laboratory tests, including measurement of the following: complement, anti-double-stranded DNA (anti-dsDNA) antibodies, lupus disease activity, and at least one additional immunological marker related to lupus (including anti-Smith antibodies, anti-ribonucleoprotein antibodies, anti-Ro, anti-La, and anti-phospholipid antibodies).

Heart disease-related events were defined to include the following: myocardial infarction (heart attack), thrombotic stroke (blood clot in a brain artery), angina (chest pain), percutaneous coronary intervention (angioplasty), a coronary bypass procedure (surgical correction of coronary artery disease), or claudication (pain during exercise).

Lupus disease activity was assessed with use of the Safety of Estrogens in Lupus Erythematosus National Assessment (SELENA)-Systemic Lupus Erythematosus Disease Activity Index (SLEDAI), a modified version of the SLEDAI.

What did the researchers find?

Of the 1,874 patients eligible for the study, 95% fulfilled four or more of the American College of Rheumatology Classification Criteria for systemic lupus erythematosus. Most of them (93%) were women, and most were either Caucasian (56%) or African-American (37%). The patients were, on average, 37 years old and many joined the Hopkins Lupus Cohort within one (39%) to five years (27%) of lupus diagnosis. The follow-up period was 1-10+ years, and most (85%) of the clinic visits were within 115 days of the previous visit. Therefore, 80% of the measurements included in the analysis were made within the previous three months or less.

There were 134 incidents of heart disease-related events in these patients; these included 65 strokes, 27 myocardial infarctions, 29 cases of angina or coronary artery procedures, and 13 cases of claudication. Among the patients for whom heart disease-related risk factor information was available (62%), 109 incidences of heart disease-related events were observed. This was substantially higher than what would be expected in the general population.

The number of heart disease-related events increased significantly with age, and was especially more common among those aged 50 years and older. Heart disease-related events were significantly more common among men, and those with increased average systolic blood pressure, elevated average cholesterol levels, and those having diabetes mellitus. Even after accounting for the increased risk due to increased lupus disease activity, and increased blood pressure and cholesterol, patients currently taking steroids at a dose of 20 mg/day or more had significantly more heart disease-related events. Also at increased risk were those with significantly increased average past levels of lupus disease activity and elevated recent levels of anti-ds DNA antibodies.

Overall, body mass index made no significant difference in the risk of heart disease-related events. After adjustment for age, there was no significant association between the incidence of heart disease-related events and any of the following: duration of lupus disease, age at lupus diagnosis, average lupus disease activity, history of skin or musculoskeletal involvement, or history of immunological involvement (anti-dsDNA antibodies, anti-Smith, anti-Ro, anti-La, or anti-ribonucleoprotein antibodies, or low complement).

What were the limitations of the study?

First, clinical variables (such as blood pressure and lupus disease activity) were only assessed quarterly, so some variables included in the analysis may not reflect current values. Second, some patients missed quarterly visits, so some data included in the analysis did not reflect the most recent measurement of clinical variables. Third, some autoantibodies were only measured once during cohort participation, so information about them is limited.

What do the results mean for you?

The results suggest that the current dose of steroids taken, rather than the cumulative dose, is perhaps the most critical factor in determining the risk of heart disease-related events in individuals with lupus. This suggests that the short-term impact of steroid use on heart disease risk is relatively more important than the history of steroids taken in the past.

This article was posted on NOV. 08, 2012, but the information is still great to know! Thanks for reading and the link is below for more info:

http://www.lupus.org/research-news/entry/steroid-related-risk-of-heart-disease-in-lupus

The Best Approach to Taking Medications

 

Good communication between you and your doctor is essential to ensure effective management of the medicines that are prescribed. Medications used to treat lupus range in strength from mild to extremely strong, and often several drugs are used in combination to control the disease. However, all medications have side effects that need to be monitored. In some cases, the medicines you take for lupus can cause side effects that require additional medications. Your physician needs to know of any and all side effects that occur, as changes in dosage or medication may be required.

An effective way to keep track of a complex disease like lupus is with a daily medical diary or journal. This can be kept by you, or by a trusted family member or friend who can go with you to your doctor appointments. Details about medications, such as dosage and possible side effects, can be recorded, as well as questions to ask at your next appointment.

As medications are prescribed, your doctor or pharmacist should provide answers to the following questions, and you should keep the answers in your medical journal.

Why is the doctor prescribing this medication?

What is the name of the medication, both brand and generic? (for example, Plaquenil / hydroxychloroquine)

What should the medication look like? (pill, capsule, cream, liquid, injection, etc.)

Is it okay to substitute a generic version?

What is the best time of day to take the medication?

How should it be taken? (with food, water, milk, on an empty stomach, etc.)

What is the dosage being prescribed?

How often should it be taken? (several times per day, once a day, weekly, etc.)

What are the side effects, both common and unusual?

When should the doctor be called about any side effects?

How long will it take for the medicine to work?

www.lupus.org

About Time – Get the Most Out of Your Meds

Unknown

By Emily Wojcik

When Ruth Harris, 26, was diagnosed with lupus in June 2004, she found it hard to accept. “The more I started researching it, the more I was in denial.” When she learned about all her medications, it got worse. “I hated opening my medicine cabinet and seeing the pile growing. I thought, ‘There’s no way this is my life, and that I have to take meds every day to function.’”

Harris, a Riverside, CA, mother of three, tried ignoring her doctors’ advice, sometimes skipping doses altogether. Then she had a severe flare. “I ended up on life support,” she says. “I realized I shouldn’t even toy with the idea of switching my meds around or not taking one.” As Harris discovered, keeping track of your medications, and taking them correctly, is critical.

“Some medications need to be taken more than once a day because of the timing and duration of the drug effects,” says Sasha Bernatsky, M.D., assistant professor of rheumatology and clinical epidemiology at McGill University Health Centre in Montreal. “Others should be taken at night, because they may cause drowsiness. Some should be taken with food, others on an empty stomach to optimize absorption.”

Prednisone (a corticosteroid) and methotrexate are best taken at specific times of day. “I tell people to take prednisone first thing in the morning, with something in their stomach,” says Mary Anne Dooley, M.D., M.P.H., associate professor of rheumatology and immunology at the University of North Carolina’s Thurston Arthritis Research Center. “The body’s natural biorhythm is to have the highest levels of cortisol (the active ingredient in prednisone) in the morning. If you stay with your body’s natural rhythm, you’ll generally have fewer side effects. And it can irritate the stomach and doesn’t taste good—you want to take it with food.”

Likewise, an osteoporosis treatment like Boniva® must be taken with a full glass of water on an empty stomach—even coffee can cut absorption by 60 percent—so this type of medication is best taken in the morning; you also should remain upright for 30 minutes before eating or drinking anything else, to avoid irritation of the esophagus.

Interactions and Side Effects

A weekly dose of methotrexate can cause unpleasant side effects, so Dooley recommends taking it when you have a couple of days off; for example, on Fridays, if you work during the week. “If you don’t feel 100 percent afterward, you have the weekend to get through it,” she says. It’s also important to avoid alcohol while taking methotrexate.

For some medications, time of day is less important than consistency. Dooley says, “Many immunosuppressants must be taken as two doses per day, with at least eight hours between. If you’re late taking a morning dose, you should still take the second dose at the right time.”

Dooley says time of day also matters less with Plaquenil® (hydroxychloroquine), but it’s best taken with food. Non-steroidal anti-inflammatories like ibuprofen and naproxen can give people heartburn or upset stomach, she says, so take them at least two hours before you lie down at night or with medications that protect your stomach. If you’re on an infusion drug like Cytoxan®, ask your doctor about anti-nausea medications to ease side effects.

Bernatsky notes that some drugs interact with each other. “For example, you shouldn’t take calcium supplements within two to three hours of taking thyroid medication, as [calcium] can interfere with proper absorption,” of thyroid medication, she says.

How to Keep It All Straight

Tremia Appling, 41, of Oklahoma City, OK, says, “You really need to be good friends with your pharmacist, who can help you out.” Diagnosed with lupus seven years ago, Appling now takes 24 different medications. “There have been times when I think, ‘I’m tired of all this medicine. I’m tired of the side effects; they’re horrible.’ I have tried to cut down, under my doctor’s supervision, of course, but even then, the lupus is far worse than the side effects.” (Appling chronicles her experiences with lupus via a video blog on YouTube. You can find her blog by searching “Treappling1” on youtube.com.)

Appling’s husband, Dwayne, helps her keep track of her meds. “We use a pill box with four boxes in it per day,” Dwayne says. “I fill up the box at the beginning of the week so we know if she’s run out of something. It also helps us see if she misses a dose.” Appling keeps a journal to record side effects and dosage, and Dwayne created a spreadsheet to keep track of her medications. “The list has the drug, the dosage, the frequency, the time that you take it, who prescribed it, and what it’s for,” he says. “At the bottom are her name, address, number, rheumatologist, allergies, and pharmacy. It’s all in one place, in case we have to go into the ER or to the doctor.”

Delesha Carpenter Miller, M.S.P.H., Ph.D., a fellow at the University of North Carolina’s Thurston Arthritis Research Center, says support from a friend or family member can help, provided it’s the right kind. “There’s not always 100 percent agreement between the type of support people want and the type offered. Unwanted support can feel like a loss of autonomy,” Miller cautions. The important thing is keeping communication lines open. “It’s a delicate line between being reminded and being nagged, so it’s up to you to communicate how often you would like to be reminded about medications.”

Harris says communication and organization were part of her coming to terms with her lupus. “At the beginning, I went on vacation, and I completely forgot my pills. I ended up in a really bad flare. Now it’s the first thing I pack: pills, then underwear.”

Med Time Resources

Keeping track of your medications can feel overwhelming, but there are resources that can help.
Sasha Bernatsky, M.D., assistant professor of rheumatology and clinical epidemiology at McGill University Health Centre in Montreal, says health agency Web sites often offer helpful tips. She recommends the New York State Department of Health’s “Stay on Schedule!” brochure, which you can download at www.health.state.ny.us//diseases/aids/docs/9388.pdf, and the National Heart, Lung, and Blood Institute’s “Tips” page at www.nhlbi.nih.gov/hbp/treat/tips.htm.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineback.aspx?articleid=2249&zoneid=67

Nick Cannon’s Battle with Lupus

LupusNowBanner_SUMMER2013

There is no easy way to describe Nick Cannon, 32. To say he is a man of multiple talents is an understatement. He’s a successful actor, radio and television personality, comedian, songwriter-rapper, and DJ. He’s an entrepreneur in charge of a multimedia company called NCredible Entertainment. He is a husband who recently celebrated his five-year wedding anniversary with superstar entertainer Mariah Carey, and he is father of their 2-year-old twins. He has always welcomed whatever challenges have come his way. But he wasn’t prepared for the biggest challenge he’d face.

In January 2012, he was diagnosed with lupus kidney disease (also called lupus nephritis). He’d experienced symptoms of fatigue and swelling in his knees before a New Year’s vacation in Aspen that worsened while he was there. He thought it might be because of the higher elevation in Colorado, but trouble breathing and pain in his kidneys made him seek medical help. He was hospitalized on Jan. 4, 2012, and tests confirmed the diagnosis.
Continue reading Nick’s Story:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineempty.aspx?articleid=5140&zoneid=225

5140-CD419-594

Find A Walk Near You!!!

Help Us Solve the Cruel Mystery™

Be part of the Lupus Foundation of America’s Walk to End Lupus Now™ event in your community and help us take steps to raise money for lupus research and education programs while increasing awareness of lupus and rallying public support for those who suffer from it.

http://www.lupus.org/newsite/pages/Walk-to-End-Lupus-Now.html?utm_source=Newsletter+7-16-13&utm_campaign=Newsletter+7-16&utm_medium=email

Finding Firm Ground: When Lupus Affects the Feet

By Laura Putre

Jacklyn Cantu’s lupus symptoms began in her feet, when they swelled and turned blue six years ago.

“It was mainly in the evenings after a day of work, and I really didn’t think much of it, but it gradually got worse and worse,” says the 26-year-old human resources associate from Bryan, TX. She tried to ease her discomfort with over-the-counter medications for six months or so. But by January 2007, “I was at the point where I couldn’t do anything on my own anymore,” she says. “My boyfriend at the time was having to dress me [and] drive me to work. We lived in a second-floor apartment, and I could barely get up and down the stairs.”

She eventually saw a doctor and was diagnosed with lupus, and she’s been in remission for four years. Even though treatment has helped, her feet won’t let her forget that she has lupus. Every day, they swell and ache due to arthritis and turn blue from sensitivity to cold—a marker of a vascular disorder called Raynaud’s phenomenon, which is fairly common in people with lupus. The autoimmune system attacks small blood vessels, causing them to constrict with exposure to cold.

David Baek, D.P.M., a podiatrist who specializes in wound care at Shady Grove Podiatry in Gaithersburg, MD, sees many people with lupus or other autoimmune diseases. Their most ­common symptoms, he says, are swelling and pain from arthritis in the foot and ankle.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineback.aspx?articleid=4868&zoneid=67&utm_source=Newsletter+7-16-13&utm_campaign=Newsletter+7-16&utm_medium=email

That’s A Wrap! Thank You For Another Amazing Lupus Awareness Month!

June 4, 2013

Every June, we reflect back on the past month and are always amazed at the success of Lupus Awareness Month. It’s no different this year. Once again, we saw incredible participation during the month of May and that’s all thanks to people like you, along with our Chapters and partners.

Because of you, whether you shared or retweeted facts about lupus, held educational events in your community, joined a Walk to End Lupus Now™, or simply wore purple and told people why, more people than ever learned about lupus during the month of May than ever before

 

Thanks to all of you, we:

  • Reached more than 2 million people weekly with lupus facts, graphics and other educational content
  • Educated more than 1,000,000 people about the signs and symptoms of lupus through our popular body infographic (right) on Facebook alone. See the full-sized version.
  • Had the highest monthly traffic on our website (lupus.org) in the history of the organization
  • Gathered more than 30,000 signatures on the petition to Congress asking them to support more lupus research

But the successes did not stop there. The response to Put On Purple Day, which was held nationally for the first time last year, was overwhelming! More than 500 people sent in photos of themselves, friends, family and even pets all dressed in purple. Multiple local and national TV anchors Put On Purple for lupus awareness, including Michael Strahan from Live with Kelly and Michael!

Michael Strahan from Live with Kelly and Michael wore our purple wristband and educated the audience about lupus In Mobile, Alabama, the Fox 10 morning show Studio 10 talent wore purple in support of ‘Put on Purple Day’! Purple nails, purple makeup, purple clothes, purple everything!

This year, more buildings and landmarks were lit purple for Put On Purple or World Lupus Day than ever before, including for the first time ever, the famous Seattle Great Wheel (lit by our Pacific Northwest Chapter) and Los Angeles International Airport. And a big thank you goes out to our friends at Saks Fifth Avenue, who Put On Purple on 5th avenue for the second year in a row. Don’t they look fantastic?

Some of the Saks Fifth Avenue Staff POP
for lupus awareness!
Congratulations to the Pacific Northwest Chapter
for lighting the Great Wheel purple!
Because of an idea from lupus activist Suzette B.,
we lit LAX pylons purple for World Lupus Day!

Though Lupus Awareness Month may be over, our efforts continue year-round with your help. Thank you all again for your support and stay connected with us on FacebookTwitter, this blog, or email for the latest in lupus research, treatments, and more. We can’t wait to see what we can achieve together next year!