Lupus Blog

Lupus is a disease that can go undiagnosed for years, largely because there can be so many varying symptoms, and the severity of these symptoms can come and go.

Quick Summary of Lupus Symptoms

If you're experiencing any of these symptoms -- or have in the past -- it's worth discussing with your doctor.

• Painful or swollen joints and muscle pain
• Unexplained fever
• Red rashes, most commonly on the face
• Chest pain upon deep breathing
• Unusual loss of hair
• Pale or purple fingers or toes from cold or stress (Raynaud's phenomenon)
• Sensitivity to the sun
• Swelling (edema) in legs or around eyes
• Mouth ulcers
• Swollen glands
• Extreme fatigue

For an in-depth look at symptoms, see Signs and Symptoms of Lupus.

The Lupus Foundation of America is hosting World Lupus Day on May 10. Along with events happening across the United States, organizations around the world will celebrate the day with the following events:

Canada

Lupus Canada

Event: Walk a Block for Lupus

Walk a Block for Lupus is an annual fundraising and public awareness event. Now celebrating it's 9th year, the Lupus Canada group invites people to join in the fight to bring awareness of the disease and raise funds to help support services for people living with lupus.

For information visit the Lupus Canada Group.

Lupus Society of Manitoba

Event: Walk a Block for Lupus

The Lupus Society of Manitoba will host Walk a Block for Lupus on May 16 at St. Vital Park, Duck Pond.

For information visit the Lupus Society of Manitoba Website.

Lupus New Brunswick

Event: Walk a Block for Lupus

Lupus New Brunswick will host a Walk a Block for Lupus event at Centennial Park. After the walk, the group will host a BBQ and raffle. Norma Reid, a lupus patient who carried the torch for the Olympics will speak. Ms., Miss & Miss Teen NB & PEI Pageant contstants will host a talent competition after the walk and the audience will particiapte in the judging. The Sky Lines Kite Club will also have kite flying.

Date: May 8 at 2 pm

For information contact the Lupus New Brunswick group.

Europe

Lupus Europe

Event: Various events

The Lupus Europe group will host various events across Europe to celebrate World Lupus Day.

Date: May 10

For information for locations, times and events visit the Lupus Europe site.

Indonesia

Care for Lupus

Event: Walk for Lupus.

At the Walk for Lupus event the Care for Lupus organization will also have free medical consultation, fair & bazaar, music concert, healthy life talk show and animated books for kids will be given out.

For more information visit the Care for Lupus website.

For more events and information about the World Lupus Day, the World Lupus Day site.

The LA Times is reporting that Benlysta, a new drug designed to treat lupus, has passed an important second clinical trial. The drug's maker, Human Genome Sciences, plans to apply for FDA approval next year. If approved, Benlysta will be the first new treatment for lupus in 50 years.

In the clinical trial, 43.2% of patients who took Benlysta in addition to their usual treatment saw their symptoms reduced, compared to 33.8% of people on a placebo.

Earlier this month, La Jolla Pharmaceutical company halted the clinical trial of its possible lupus treatment drug Riquent. It was hoped the drug would stave off episodes of kidney inflammation caused by lupus.

An independent monitoring board called use of the drug “futile” after reviewing preliminary trial data. No new drug for lupus has been approved in 50 years.

There is just the smallest glimmer of hope, however, since La Jolla will have a chance to review the trial data and determine if its worth arguing against the monitoring board’s ruling.

Among lupus patients, La Jolla was considered “the little engine that could,” since Riquent is the only drug in the small company’s arsenal. Now that clinical trials have stopped, patients will have to look toward the next wave of possible treatment.

Today we'd like to take a moment to welcome all of those women and men who have been newly diagnosed, or know someone who has been newly diagnosed, with lupus.

Today we’re asking the question, what type of lupus do you have? And more importantly, did you know that there was more than one type?

Lupus takes on several forms and can affect any part of the body, but it most commonly attacks the skin, joints, the heart, lungs, blood, kidneys and brain. So what are the various types?

They are:

• Systemic Lupus Erythematosus
• Drug Induced Lupus
• Discoid Lupus
• Neonatal Lupus

These are the most common forms, but there are other forms as well. See something missing? Let me know at lupus.guide@about.com.

If you’ve been newly diagnosed with lupus, or have lived with it for some time, you may have dozens of questions related to the disease. In an effort to collect as many of those questions as we can, provide some short answers, and then link to more in-depth information, we have launched this Frequently Asked Questions page. Here you will discover questions that have been asked, with a link to provided answers.

If you have questions that are not covered in this document, please e-mail me at lupus.guide@about.com. We hope to add to this page regularly, and welcome any and all questions you might have.

Interesting news: new lupus research will focus on why some therapies work well for some people with lupus, but not others.

The focus of the research study, from the University of Rochester Medical Center in Rochester, N.Y., is on B-cells. B-cells are considered “key combat-ready immune cells.” B-cells are also often responsible for manufacturing auto-antibodies. The research should also open up the way the immune system works and mechanisms behind lupus.

Researchers are specifically looking at how bone marrow produces B-cells, and what quality control checkpoints it imposes to ensure that only healthy cells are released into the bloodstream.

This quality control system breaks down in lupus patients, and B-cells produce auto-antibodies and attack the patient's own body. This leads to the myriad symptoms and complications lupus patients suffer, including inflammation and damage to joints, skin, and, in some cases, the heart, kidneys and brain.

One treatment is known as "B-cell depletion therapy.” This therapy reduces the number of B-cells in the patient's bloodstream. It was successful for some – and of those, the success was quite noticeable. Now study specialists are trying to determine why this therapy works so remarkably for some, but not others.

Discovering why should help create and direct future therapies for lupus patients.

It’s been 50 years since the FDA approved a drug specifically for treating lupus, and though a new drug isn’t in line quite yet, there are promising signs that we’re getting closer.

Word comes that Cephalon Inc. is dishing out $30 million to ImmuPharma P.L.C. for licensing rights to ImmuPharma's drug Lupuzor, an investigational treatment for SLE.

It’s a money-where-its-mouth is moment, as recent studies of the drug show "promising interim results." Cephalon is assuming all expenses for the next phase of drug studies, as well as for regulatory filings and subsequent commercialization of the product.

Lupuzor modulates the body’s immune system so it does not attack healthy cells without causing adverse side effects. It has the potential to halt the progression of lupus in a substantial proportion of patients. The drug continues to undergo tests in the United Kingdom.

Cephalon is located in Frazer, Pa.

Saturday saw the celebration of Passionate Purple Week, created by the Great Northeast Athletic Conference (GNAC) to promote lupus awareness. All women’s basketball games during the week of Jan. 17 to 24 raised funds for the Lupus Foundation of America (LFA). Money raised will fund lupus research, education, and support services. Though numbers have not yet been announced, the GNAC hoped to raise $2,500.

Schools in the GNAC include Norwich, Emmanuel, Johnson & Wales, Rivier, Emerson, Lasell, Simmons, St. Joseph's (Me.), Suffolk, St. Joseph (Conn.), Albertus Magnus, Mount Ida, and Pine Manor.

The Lupus Foundation of America’s Advocacy Day 2009 is coming up fast. This year’s event will take place on March 2 and 3 in Washington, D.C.

This is the 11th Advocacy Day, during which people with lupus, friends, family and other lupus advocates descend on the U.S. capital to urge lawmakers to fund further research, pass legislation – whatever they can – to help further the understanding of this disease, as well as find and create better treatment options.

This year’s Advocacy Day may focus on the 50th anniversary of the U.S. Food and Drug Administration’s last approval of a drug specifically for lupus. No drug targeted to the disease as been approved since 1959.

The event includes a meet and greet lunch, advocacy training sessions, and a dinner, featuring speaker Susan Manzi, M.D., MPH, LFA Board & Medical-Scientific Advisory Council Member, and Associate Professor of Medicine at the University of Pittsburgh.

Those interested in registering for the event can do so on the LFA’s Web site.