Lupus Blog Spotlight: Getting Closer to Myself

Good morning everyone:

Hope you had a great weekend. Mine was ok. Have another quick movie review with you. I saw No Country for Old Men. Made by the Coen brothers (who I really like), No Country for Old Men was a decent movie. I guess I had heard so much about it that my expectations were a bit high, and so while watching it, I was a little underwhelmed. For me, the Tommy Lee Jones parts of the movie were the weakest parts.

Lupus Blog Spotlight

I would like to share another lupus blog with you. It is called Getting Closer to Myself. The blogger's name is Leslie and she lives in Michigan. Here's a little bit about her ... in her own words.

"This blog is about a lot of things in my life, but it's main purpose is to get my story out there and create awareness about autoimmune diseases. In April 2008, at the age of 22, I was diagnosed with rheumatoid arthritis and lupus. The road to get to that point was by no means an easy one. And if I can help make that road easier for others, that is my goal."

If you have a few moments, swing by Getting Closer to Myself and say hi to Leslie.

That's the lupus scoop from my end.

Until next time, Wick

Make a Gift to the Lupus Foundation of America -- and Have it Double -- Today!

The Cooper Family Foundation has pledged $200,000 to the Lupus Foundation of America (LFA). Additionally, they have challenged us to match their pledge with new contributions from supporters of the LFA.

Any gift that you contribute between now and August 15, 2008 will be matched by the Cooper Family Foundation.

Your contribution will advance desperately needed research. Last year, the LFA could afford to fund only one in four requests from scientists working to bring us closer to new treatments and the answers patients and families still await.

Think of how much more impact your gift will have when it is matched dollar-for-dollar by the Cooper Family Challenge. Your investment will have double the impact on our life-saving work, and will go twice as far in our fight against this life-threatening, life diminishing disease.

With your gift today -- doubled by the $200,000 Cooper Family Challenge -- we can continue to fund promising research which yields new treatments, new hope, and ultimately, a cure!

Thank you for giving generously now, when your gift will go twice as far!

Updates Coming to LFA Message Boards, Other Lupus News to Note

Good morning everyone ...

Lots going on today. So before I jump into the fray, I wanted to share some lupus news with you.

LFA Message Boards Grow; Updates Coming

As of this morning, there are more than 1260 registered users for the LFA Message Boards. Which is totally fantastic!! If you haven't joined the boards yet, you don't know what you're missing. Get in on the action! Join the message boards here.

Also wanted to share that some new categories are coming to the message boards. You'll start to notice some changes over the next week.

Lupus Now Magazine Needs Your Help!

When you have an unpredictable disease like lupus, it can be comforting to know that vast stores of medical information and people who really get what you’re going through are just a couple of mouse clicks away on the Web.

In the "Opining Online" column in the Fall 2008 issue of Lupus Now, we want to print your answers to this question:

"What's the best advice you can give a person with lupus who’s applying for SSDI benefits?"

Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Advice for SSDI Benefits" in the subject line of your email. We'll print as many of the responses as we can.

Your deadline is July 15!

That's all the lupus scoop from my end. Until next time, Wick

Something New Under The Sun

Last summer, the Food and Drug Administration (FDA) proposed new standards for the creation, testing, and labeling of over-the-counter sunscreen products containing ultraviolet A (UVA) protection. UVA rays stay at the same intensity throughout the day and the year, as opposed to ultraviolet B (UVB) rays, which are significantly stronger in summer. Previously, most of the FDA’s focus on sunscreen products involved reducing exposure to UVB light.

The new rule would include a four-star rating system on the product label -- from a low of one star to the high of four stars -- so that consumers can easily find the level of UVA protection provided by each product. The number of stars would be based on two tests: one to determine the product’s ability to reduce the UVA light passing through it, and the other to determine the product’s ability to prevent tanning. The meaning of “SPF” will change as well, from “sun protection factor” to “sunburn protection factor.”

If the rule is adopted, the maximum SPF value will increase from 30 to 50+, the highest value the FDA can verify using current testing methods. Also included would be a new “sun alert” statement and instructions emphasizing the importance of reapplying sunscreen.

The FDA is still reviewing the submitted data and is expected to issue a final rule for over-the-counter sunscreens in the near future.

Taken from the Summer 2008 issue of Lupus Now magazine

Happy 1st Birthday, "On the Road to a Cure"

It’s a milestone I don’t think I expected. Today – June 20 – is the 1st birthday of the LFA’s blog, On the Road to a Cure.

More than a year ago, a group of LFA staff sat in a conference room, trying to figure out other ways in which to engage people living with lupus. “Why doesn’t the LFA create a blog?” someone suggested. More than 155 posts later, here we are.

I think it’s been a great year. People are reading this, and seem appreciative of the info that we’re sharing. And through the wonders of the blog, I have been fortunate enough to reach out to many of you – both here in the states, and around the world – who are living with lupus. It’s been amazing! And as a result of that contact, our blog now boasts links to almost 50 lupus bloggers worldwide.

Although I am out of the office today, I did want to say thank you to everyone who reads our blog. Together, we share a journey to raise public awareness about lupus, and to one day find a cure for this disease.

Have a wonderful weekend,
Wick

Lupus Blog Spotlight: Lupus Pie

Good morning everyone:

Well let me tell you, after the miserably hot weather we've had here in DC as of late ... this 70 degree weather is awesome. I hope it sticks around for a while.

Been a while since I shared a movie review with you. Based on a friend's recommendation (which has burned me before), I saw Lust in the Dust -- a spoof of Westerns -- over the weekend. Made in 1985, Lust in the Dust stars Tab Hunter, Divine and Lainie Kazan. Not too bad. It had some pretty funny moments.

Lupus Blog Spotlight

I would like to share another lupus blog with you. It is called Lupus Pie. The blogger's name is DC and she lives in California. Here's a little bit about her ... in her own words.

"I'm a happily-married, successful attorney who thought she had it all. Then at age 33, I was diagnosed with lupus and premature ovarian failure. After three years of trying to conceive, my husband and I are embarking on yet another IVF cycle AND starting the adoption process. We have fallen in love with Ethiopia and cannot wait to adopt at least one child from that country. Please join us on our (unusually bumpy, but never boring) journey to parenthood."

And for those of you who are curious as to why her blog is called "Lupus Pie" ... you can learn about the origin of the name here.

If you have a few moments, swing by Lupus Pie and say hi to DC.

That's the lupus scoop from my end.

Until next time, Wick

Coming Soon to Your Mailbox: Lupus Now Summer 2008 (and if you’re not a subscriber, here’s what you’ll be missing!)

It seemed only natural for our Summer magazine to have its cover story on how and why UV rays from the sun can be bad for people with lupus. But did you know that UV rays from fluorescent light can affect you, too? We’ll talk about how you can protect yourself from getting a rash or worse -- triggering a flare. (Hint: you can even be fashionable while you’re being safe!) In this story we also include the latest on the law to switch from incandescent bulbs to fluorescent bulbs, as well as the FDA’s proposed new standards for over-the-counter sunscreen products.

Lupus is called the ‘prototypical’ disease for a good reason -- lots of reasons, in fact: symptoms come and go, mimic other illnesses, change over time, affect just about any part of the body, are different for different people. But what’s it like to have one or two or even three other illnesses besides lupus? For one thing, how do you know which symptoms belong to which condition? And which doctor is treating which condition? Read the stories of three people living with more than their share and gain a new perspective on overlapping symptoms and individual solutions.

Our series of articles on clinical trials comes to a close with this third installment. Find out how researchers feel about the challenges and importance of enrolling participants of different ethnicities, and the different ways investigators reach out to diverse community groups and help overcome cultural barriers. All three articles will be linked with the LFA’s soon-to-launch Website for clinical trials education.

It’s reader survey time again! We want to know what you like about Lupus Now, what you would change, what’s most important to you, and the topics you’d like to see covered in future issues. The survey will be posted online but only through July 21, so look for it here, at lupus.org/magazinesurvey. You’ll be able to read all about the results in the Fall issue, due out in early October.

You know those Internet warnings and water cooler chatter about all the things that can trigger or affect lupus? We put on our investigator hats and looked into the most enduring of these in order to help you separate the facts from the fiction. Five of the best known are featured in Lupus Living in this issue, and we’ll keep putting them in upcoming issues of LN as we hear about them. Your favorites, or any you wonder about, are welcome; send them to lupusnow@lupus.org with “Triggers” in the Subject line.

And speaking of popular topics, who hasn’t experienced the dreaded weight gain from taking prednisone? In Wellness, we discuss how to deal with the physical and emotional effects of that unpleasant side effect. We also offer answers to eight of the most common questions people have when they are first diagnosed with lupus. In the Fall magazine we’ll look at eight more.

Summertime means ... camp time! A variety of camps exist for families dealing with chronic illness, like Lupus Week at Camp Sunshine, and Camp Discovery for children with skin disease. Find out how your gang can take part. And teens, don’t miss this interesting roundtable discussion as three young ladies talk about staying active with lupus, while at the same time taking extra care in the sun.

So, there’s your sneak peek at what’s in store in the Summer issue of Lupus Now. We hope you’ll enjoy it.

Don’t forget, the survey is online now, and we need to hear from you. We get our best ideas from our dedicated readers, so you never know -- your suggestion could appear in one of next year’s magazines!

UCB Reports Initial Clinical Data Provide Encouraging Results

PARIS, FRANCE – UCB announced that data presented Thursday show that epratuzumab treatment demonstrated clinically meaningful improvements in moderate and severe flaring systemic lupus erythematosus (SLE) patients. The data were from the first placebo–controlled studies using epratuzumab in SLE patients and were presented at the annual European Congress of Rheumatology (EULAR).

The clinical studies presented at EULAR showed that flaring SLE patients treated with epratuzumab experienced reduced disease activity and were less reliant on the use of steroids to control the disease than those receiving placebo. The incidence of adverse events was similar for the epratuzumab and placebo groups.

“These initial clinical results for epratuzumab are very encouraging,” commented lead study author Dr Michelle Petri, Director, Lupus Center and Professor of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA. “Developing new compounds for SLE patients is critical because currently available treatments, such as immunosuppressants and corticosteroids, often have serious and debilitating side-effects. We look forward to seeing results from other clinical trials involving epratuzumab.”

Epratuzumab is a fully-humanized anti-CD22 compound with the potential to modulate B-cell activity. Although the exact function of CD22 is not fully understood, it is known to be involved in B-cell development, function and survival. B-cells are known to contribute to SLE by producing antibodies against the body’s own tissues, causing the body’s immune system to turn on itself, attacking cells and tissue and resulting in inflammation and tissue damage. SLE is a chronic and potentially fatal autoimmune disease with a variable and unpredictable course. It can affect any part of the body, but most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys and nervous system and is characterized by periods of flares, or exacerbations, interspersed with periods of improvement or remission.

In the clinical studies, 90 patients were randomized to receive epratuzumab 360 or 720 mg/m2 infusions at weeks 0, 1, 2 and 3, with subsequent treatment cycles of two infusions one week apart, every 12 weeks, for up to four treatment cycles over a 48-week period. The efficacy endpoints included a reduction in disease activity, as measured by the BILAG* Activity Index, steroid sparing and improvements in both physician and patient global disease activity assessments. Both doses of epratuzumab resulted in clinically meaningful reductions in total BILAG scores versus placebo from week 4 through to week 48 and reduced steroid use. Also, according to physician and patient global assessment scores, more epratuzumab patients showed improvement compared with the placebo group, with a high degree of correlation between the patient and physician global assessments. Additionally, epratuzumab was shown to be well-tolerated in these studies, with a similar safety profile as placebo. The incidence of serious adverse events, adverse events in particular reflecting infections and infusion-related reactions, were similar across active and placebo treatments.

UCB has initiated a new Phase IIb clincal study program for epratuzumab, which consists of two studies. The primary objective of the phase IIb program is to assess the dose response and the dose frequency for epratuzumab. Further information on the study can be found at Clinicaltrials.gov.

Men's Health & Lupus Chat Transcript Now Available, Other Lupus News to Note

Good morning everyone ...

And greetings from an incredibly hot Washington DC. Weather here the last few days has been in the high 90s, with a heat index of 108. Very unusual for this time of year. I hope wherever you are, it's considerably cooler.

Wanted to share some lupus items with you.

Transcript from Tuesday's chat posted online

Thank you to everyone who attended yesterday's chat, featuring guest expert Dr. Jennifer Grossman, who answered questions regarding "Men's Health & Lupus." The chat went well.

The transcript from that chat has now been posted online. You can read it here.

Check out the schedule of upcoming chats here.

Summer 2008 Issue of Lupus Now Coming Soon

The Summer 2008 issue of Lupus Now will be available within the coming weeks. As always, this issue is full of great stories, including the third installment in the Clinical Trials series; an article on sun sensitivity; and a feature on lupus in overlap with other diseases.

You can also read the latest features of "Ask Dr. Paul" and "Teen Talk."

Keep an eye out for your copy of the Summer 2008 issue of Lupus Now!

Walk for Lupus Now

LFA's Spring Walk season is winding down and will pick up again in the fall. This is the last Walk taking place this spring. If you're in the Milwaukee area, we hope you can join us.

Milwaukee, WI -- Saturday, June 14, 2008

That's your lupus scoop for today.

Until next time, Wick

80 International Lupus Experts Met to Address Gaps in Clinical Research to Speed Approval of New Treatments

Research scientists and physicians – including scientific thought leaders from university centers, pharmaceutical and biotechnology industries, the National Institutes of Health, U.S. Food and Drug Administration, and other government agencies – addressed two important gaps impeding approval of new treatments for the autoimmune disease lupus during the Lupus Foundation of America’s (LFA) 2nd International Flare Conference June 5 and 6 in suburban Washington, DC. These experts discussed modifications to tools used to monitor disease progression and how lupus patients respond to treatment. They also worked to develop a consensus definition of a lupus flare, which is an increase in disease activity.

It has been difficult to define a lupus flare because the disease manifests itself in diverse ways in different people, affects multiple organ systems, and can increase and decrease in severity from one day to another. Accurately and consistently measuring a flare is crucial to monitoring progression of the disease in patients and to evaluating the effectiveness of treatment over time.

“This effort is part of the LFA’s strategy aimed at bringing down barriers that have obstructed progress on research and to advance the science of lupus,” said Sandra Raymond, LFA President & CEO. “The fact that no new drug therapies have been approved for lupus in more than four decades underscores the need to address issues and answer questions that have impeded the successful outcome of clinical trials of new, safe and effective therapies for the disease.”

Without new approved drugs specifically for lupus, physicians must rely on therapies borrowed from other diseases. Many are highly toxic, causing side effects that can be worse than the primary disease. The LFA is working to bridge gaps in lupus research to stimulate additional public and private investment in the development and approval of new lupus treatments.

Sun Safety Myths

There are many misconceptions about how to stay safe in the sun. Be aware of what’s not true about sun protection:

1. A beach umbrella keeps you safe from the sun.
   Don’t be fooled: A large percentage of ultraviolet (UV) light bounces off the sand onto your skin, even if you’re under an umbrella. Water and snow have the same reflective effect.



2. Sunscreen with an SPF of 45 is three times more effective than an SPF of 15.
   Just because the SPF is a higher number doesn’t mean it’s offering a higher degree of protection. In fact, an SPF 45 sunscreen gives only about five percent more protection than an SPF 15 screen. Also, higher-rated screens don’t last any longer than lower-rated products.



3. Building a "base" tan protects against sunburn.
   There is no such thing as a "safe" tan that will offer protection later. Exposure to UV rays increases your lifetime risk of skin cancer and other skin damage.



4. "Self-tanning" products help protect against sunburn.
   These products may be perfectly safe and may be a good way to make yourself appear tan without having actual sun exposure. But be aware that the dyes in self-tanning lotions and sprays don’t offer complete UV protection. According to long-time editorial advisor Richard D. Sontheimer, M.D., the common active ingredient in self-tanning products, dihydroxyacetone, is well-recognized to modestly block some UVA and visible light wavelengths, and might also provide some degree of protection against the sunburning UVB rays.



5. Only the people with cutaneous lupus, or with systemic lupus and photosensitivity, need to worry about UV protection.
   No matter how lupus affects you, you need to be aware that certain medications can make you unusually reactive to UV light. Called "chemical photosensitivity," this can result in sunburn or rash after even brief sun exposure. The drugs known to cause this type of skin sensitivity are antihistamines, diuretics, non-steroidal anti-inflammatory drugs and antibiotics, including tetracycline or "sulfa" drugs. Sunscreens offer only limited UV protection for anyone taking these medications, so if any of these are part of your treatment, talk to your doctor and pharmacist about special sun-avoidance strategies. (Adapted from Bottom Line Health newsletter, June 2003)

Taken from the Summer 2005 issue of Lupus Now magazine

Annie & Tom’s “Race to the Altar” Ends; Their Impact Goes On

We are sorry to report that Annie and Tom did not make it through to the final round in the NBC TODAY Show’s “Race to the Altar.” Their quest to be married on the plaza outside the TODAY studios ended on June 4.

However, the impact of their efforts lives on in the increased awareness of lupus that Annie’s story provided.

The Lupus Foundation of America is very proud of Annie for sharing her story about lupus with millions of viewers. She served as an inspiration to people with lupus around the world, who were following and supporting her "race to the altar."

We thank Annie and Tom for their willingness to serve as spokespeople for this important cause and we wish them the best as they journey through life together.

On behalf of the entire lupus community, we extend our gratitude and blessings. You made all of us very proud!

Men's Health & Lupus -- the Tues., June 10 Webchat at the Lupus Foundation of America

Morning all.

Wanted to give you a reminder about the Lupus Foundation of America's Webchat this coming Tuesday afternoon, June 10, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Jennifer Grossman, who will serve as the guest expert for the Men's Health & Lupus chat.

Dr. Grossman is a physician in the Division of Rheumatology and an Assistant Professor of Medicine at the UCLA Medical Center. Dr. Grossman holds an MD degree from the University of Rochester School of Medicine and Dentistry and has been practicing medicine for 15 years. Her clinical interests include: lupus, osteoarthritis, osteoporosis, rheumatoid arthritis and vasculitis.

You can submit a question in advance here.

We hope you can join us Tuesday afternoon. To do so, you can log in to the live chat here.

After the chat, you are invited to continue the discussion in our message boards.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

Lupus News to Note

Hey everyone ...

The national office of the LFA is preparing for the Second International Lupus Flare Conference, here in the DC area this Thursday and Friday (June 5-6). As you might expect, there's a lot to do to get ready, so this will be brief.

Transcript from Wed.'s chat posted online

Wanted to thank everyone who attended last Wednesday's chat, featuring guest expert Dr. Joan T. Merrill, who answered questions regarding "Medication Management & Lupus." It went really well. The transcript from that chat has now been posted online. You can read it here.

Walk for Lupus Now

LFA's Spring Walk season is winding down and will pick up again in the fall. This is the last Walk taking place this spring. If you're in the Milwaukee area, we hope you can join us.

Milwaukee, WI -- Saturday, June 14, 2008

As a reminder, money raised from Walk for Lupus Now Walks support lupus research, lupus education programs, and patient and family support services.