In order to make that a little easier, I’ve added a sidebar widget that provides updates from the Lupus Research Institute. If you move your mouse over a particular news item, you will be able to see a short snippet of the article. If it seems like something you’re interested in reading, you can click the link and read the actual article.

I spent a little time on the Lupus Research Institute website yesterday, reading some comments made by Dr. Bevra Hahn regarding the new lupus drug Benlysta:

These new results show that administration of Benlysta for one year, in addition to standard treatments for SLE, resulted in substantial improvement in almost 60% of people, compared to only 46% in the group that received placebo plus standard care; the improvement included better quality of life.

I had the good fortune to meet Dr. Hahn a few years ago at a health conference where she was featured as a guest speaker. I was really impressed with her. I have nothing but great things to say about the medical staff at UCLA. It is a very long drive from Fresno to Los Angeles, but it is worth it to get such great medical care. Jenny’s rheumatologist is fabulous.

I hope the sidebar widget makes it easier to stay up with the latest lupus news. I don’t want to overwhelm the site with too much information, but it’s good to stay informed.

Check out 50 Years Without a New Lupus Drug! What Does it Mean to You? over at On the Road to a Cure. It’s pretty ridiculous when you think about it. This sentence really stuck in my mind:

No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the old drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.

For those of you who deal with the side effects of lupus medication, you know that this can be true.

Check out the article. It may be too late to give feedback but we can check out the results when they are posted.

Fluorescent Light Bulbs and People with Lupus

Some reports suggest that there may be enough UVB radiation in fluorescent light bulbs to cause photosensitivity in people with lupus. Are you one of the people affected by fluorescent light bulbs? Please share your story with us at advocacy@lupus.org.

This has been one of those things that just dumbfound people when they see it. Jenny is super sensitive to fluorescent light. She will usually turn red and rashy within about ten minutes of stepping in a Target.

Oddly enough, the most dramatic example of this reaction happens in the doctor’s office. Those small brightly lit rooms make my wife butterfly almost immediately. I remember that some of the doctors were amazed at how quickly it happens. One doctor actually turned the lights out and then went to get a colleague in order to show him how quickly it happens.

I’ve seen articles about how we will eventually move almost entirely to fluorescent because of the impact on the environment. I wonder how that will affect my wife. Not only does she butterfly but she also tends to get headaches from the fluorescent lights. Maybe the technology will get better and the spectrum of light will be a bit more friendly for light-sensitive lupus patients.

If you have had any experience with this, I do encourage you to share your comments here and email
the folks at the LFA at advocacy@lupus.org.

In research published online today in the journal ‘Nature Genetics’, Professor Tim Vyse from Imperial College London and colleagues in the US and Canada have identified a new genetic variant, OX40L, which increases the risk of developing lupus. The variant, which is carried by one in six people in the UK, increases the risk of developing the disease by 50 per cent per copy.

“Lupus can be a very serious condition, but because its symptoms are often similar to those of other illnesses, it can be difficult and take time to diagnose,” says Professor Vyse, a Wellcome Trust Senior Fellow from Imperial College. “Although it appears to have a number of environmental triggers, we are now beginning to get a clearer picture of the role that genetics also plays in the disease.”

OX40L is a gene that is important in several different types of cells in the immune system. The work, carried out by members of Professor Vyse’s laboratory, shows that the genetic variants in the OX40L gene that amplify the risk of lupus do so by increasing the amount of OX40L present on the surface of lymphocytes, which are key components of the immune system. They are currently studying exactly how this increases the risk of SLE.

“As well as causing problems with diagnosis, lupus’s many symptoms make it difficult to work out which are key to the disease,” he says. “Identifying a specific gene will enable us to see at a molecular level what is behind Lupus and develop treatments targeted at inhibiting or blocking the action of those genes.”

Professor Vyse’s group and other scientists have previously discovered two other genes implicated in lupus. IRF5 is a gene involved in regulating interferons, of which there appears to be an overabundance in lupus. Interferons are natural proteins produced by the cells of the immune system in response to challenges by pathogens such as viruses, bacteria and tumour cells. The role of the second of the previously-discovered genes, FCGR3B, in lupus is unclear.

At first I was pretty excited about this, but a Google search of the terms lupus gene yielded a Santa sized list of good research dating back decades that announced the discovery of a genetic connection in lupus. Some of this research was later revealed to be faulty; however, this study, while relatively small with only 1400 participants in a single region, could lead to new treatments and diagnostic tests.

Is this useful to you? I don’t want to just report things that you already know. Is a weekly lupus news feature helpful?