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Hey everyone, I’m now writing on About.com on their Disability channel writing about various disabling conditions, including Lupus.  Please check out the site and join in on my new blog on that site as well.

I’ve also been busy writing books.  My newest book, Murder in Middleton, is available free on Kindle to Amazon Prime members, and 99 cents for non-members.  The book can also be read on Adobe eBook Reader too.  It will be available on iPad and Barnes & Noble November 15, 2012.  If you’re a self-published writer, or just want to learn more about self publishing books, please drop by!

~Charlotte

I could hardly believe this- it is about time! After 50 years, we finally have a drug for specifically treating Lupus!

The following is an excerpt from Human Genome Science:

HUMAN GENOME SCIENCES AND GLAXOSMITHKLINE ANNOUNCE FDA APPROVAL OF BENLYSTA® (BELIMUMAB) FOR TREATMENT OF SYSTEMIC LUPUS ERYTHEMATOSUS

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  • First new approved drug for systemic lupus in more than 50 years 
  • To be available to physicians and patients before the end of March

ROCKVILLE, Maryland, and LONDON, UK – March 9, 2011 – Human Genome Sciences, Inc. (Nasdaq: HGSI) and GlaxoSmithKline PLC (GSK) today announced that the U.S. Food and Drug Administration (FDA) has approved BENLYSTA® (belimumab) for the treatment of adult patients with active, autoantibody-positive systemic lupus erythematosus (SLE) who are receiving standard therapy.

The label for BENLYSTA includes the following limitations of use: The efficacy of belimumab has not been evaluated in patients with severe active lupus nephritis or severe active central nervous system lupus, and has not been studied in combination with other biologics or intravenous cyclophosphamide. Use of belimumab is therefore not recommended in these situations.

“We and GSK are honored to have the opportunity, with the approval of FDA, to bring BENLYSTA forward in the United States as the first new drug for systemic lupus in more than 50 years,” said H. Thomas Watkins, President and Chief Executive Officer, HGS. “We expect to have this novel therapy available to physicians and patients within about two weeks, and our entire organization looks forward to the positive impact we hope this new therapy will have for patients with systemic lupus.”

Slaoui, Ph.D., Chairman, GSK Research and Development, said, “The approval of BENLYSTA is an important step for appropriate lupus patients. Patients have been waiting for new treatment options to help manage this chronic disease. We look forward to working together with HGS to bring this new medicine to patients in the U.S.”

Hello Everyone!  I received this information recently from one of our readers and wanted to pass it along to you-

The J.Lodge Corporation, a quality call services company, has sustained profitability since 1999 and accredits its success solely to its unique employee model that consists of disabled business Americans. J.Lodge is striving to provide work from home part-time careers for disabled Americans. Currently, J.Lodge is expanding and accepting applications for those individuals who are interested in our company and who qualify for our positions. If anyone is interested, please visit: http://www.jlodge.com/careers and apply online.

~Charlotte

Editor, Lupus4You.com

Dear Readers, I received this information recently and wanted to share it with you:

Hi!

I wanted to pass along a new Lupus resource.

It is through a website http://www.lupus.physiciansforpatients.com

It is a community of lupus folks that interact online to give one another support.

There is a dedicated physician on the site to answer questions for the patients.

We originated as a group of doctors dedicated to helping people online in a way to help with high health care costs. The idea is to give a free resource to people that need alternative opinions and information. There are a lot of people that have limited access to health care (can’t find a specialist in their area, long wait times, etc.). This way it is easier for a smaller number of physicians to help a larger number of people.

Dr. Shanahan is the doctor. He is board certified in Rheumatology and trained at Duke University

In addition, we will be incorporating ‘health trackers’ soon! This tool can be used by the patients to track their symptoms and to see what may be contributing to them.

Physicians for Patients will also be looking for associations (trends in complex data sets of the cumulative data collected in this large community of patients. This is done in an automated anonymous manner). This is the exciting part! Our hope is to identify correlations between symptoms, daily activities, medications, and the environment. This will help us to better understand Lupus and hopefully to guide us to new potential treatments.

I am also hoping that you like the site and help us to spread the word about what we are trying to do (any group messages that can be sent/ links/ blogs are much appreciated) In order for us to make some new head way into better understanding lupus through identifying new statistical correlations we need quite a large people to participate.

Best regards,

Art

Art Kaminski MD

President, Physicians for Patients

Recently one of my blog visitors forwarded me some information on a series done by the New York Times on Lupus patients (thanks Cyndy!).  This particular series allows you, the visitor, to hear Lupus patients discuss the disease in their own words.  The patients featured come from every walk of life and lend their voices to share information on Lupus, from living with it to treatment issues.

I encourage everyone to take time and visit this series on the web.  It is encouraging and at times, heart rending.

Visit it here:  Patient Voices: Lupus

Blossom CollageSpring is that time of year when I start looking forward to getting out and seeing people.  For those of you who are housebound much of the time, you understand what I mean.  Winter brings so many problems for people with Lupus- from falling on icy paths to aching joints when the weather changes.

I was so happy this year when leaves started appearing about a week ago.  I live in upstate New York, and we’re probably behind much of you who are reading this blog.  This morning I looked out my kitchen window and realized my white lilacs are on the verge of being in full-bloom – not easily achieved in an area where frost still can still taunt us, even in May.

With all of the blooming and budding going on, I decided to revisit an old hobby- photography.  Since I live in a rural area, there is quite a lot to take photos of, especially if you love wildlife.  I shot two rolls of film and promptly took them to the closest Walgreens.  When I picked up the film later, I was pleasantly surprised at how well the photos turned out.

My new interest in photography has not only given me a reason to get outside and enjoy the fresh air, it has also renewed my interest in a long-forgotten hobby.  I encourage others to do the same, especially if they find themselves locked away from the rest of the world, suffering in silence, with Lupus.

I recently had a friend help me hang bird feeders all over my front porch and back yard to entice feathered friends to visit.  This will give me more things to photograph in the future, after the spring blooms are gone.  If you are looking for something to do that doesn’t wear you out (buy a tripod and save your arms!), consider this hobby.  While the results may not end up on the cover of National Geographic, they could end up on your family newsletter.

Many women who have Lupus have successful pregnancies, however, a few women have difficulties or suffer miscarriages as a result of their disease.  Women who have these problems may have RSA or Recurrent Spontaneous Abortions.  This heartbreaking condition only adds more stress to individuals who already need less stress in their lives.  Individuals diagnosed with this condition have had at least 3 consecutive pregnancies that have ended in miscarriage.

There is good news on the horizon though.  Intravenous Immunoglobulin Therapy has been approved as a therapy for lupus patients, and it may also help pregnant lupus patients avoid miscarriages as well.

What is Intravenous Immunoglobulin Therapy?  Immunoglobulins (antibody proteins) are administered intravenously.  Currently this type of therapy is in short supply and not everyone will be able to obtain it or afford it (it is a costly procedure that may not be covered by insurance since it is considered “elective.”)

If you are interested in learning more about this particular research, please read our article, Lupus and Pregnancy Loss or visit the Lupus Foundation for the specifics of this therapy study.

Charlotte Gerber, Editor

Lupus4You.com

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