About Lupus

Lupus Coping Corner

Learn About Lupus Complications and Studies Enrolling Patients

Jessica Rowshandel, M.S.W.
Amy Caron
Project Director
Lupus Research Institute

Here at the S.L.E. Lupus Foundation we are preparing for our annual Hospital Tour patient-education series where we facilitate a presentation by a rheumatologist on a lupus topic at one hospital in each of the five NYC boroughs. This year we are taping some of the sessions to provide the information to those who cannot attend, so check back on our website later this fall.

The upcoming Tour will provide information on many of the most common manifestations of lupus such as the kidneys, the heart and joints and muscles. Read more on the specific dates/times of each session. We invite you to hop on at any stop or stay on board to attend all five. Meanwhile, if you have any of these or other complications, you might want to ask your physician about possibly participating in a research study. To learn even more about trials visit lupustrials.org, our website dedicated to providing patients and their families with information about research studies. The Patient Resource Guide: Frequently Asked Questions Concerning Clinical Trials is a great resource that should answer most of your questions.

Below are a few questions we hear most often:

Why should I care about clinical trials?

If you or someone you care about has lupus, you know how badly new drugs for lupus are needed. Researchers, doctors, drug companies, and others are working on this. To test whether they have identified a drug that is safe and will work, they run what is called a "clinical trial," in which people with lupus try it out.

Why should I consider taking part in a clinical trial?

A person enrolled in a clinical trial usually gets several positive things out of the experience, such as expert care by the doctors and nurses who are helping to run the trial, and a chance to try out a treatment before it is widely available.

Many people who take part in a clinical trial also say that it makes them feel really good to give researchers a chance to learn so much. Without enough people in clinical trials, it's very unlikely that new drugs and better ways of preventing and caring for lupus will come about.

What kinds of trials are being done in lupus?

There are several, each with a different overall purpose.

  • Treatment trials test new treatments or drug combinations.
  • Prevention trials look for better ways to prevent flares or even stop lupus from developing in people who have never had it. All sorts of things—medicines, vitamins, vaccines, minerals, lifestyle changes—are tested in these kinds of trials.
  • “Diagnostic” trials and “Screening” trials aim to find better tests for diagnosing or detecting lupus (or flares) before serious damage is done.
  • Quality of Life trials search for ways to improve the comfort and quality of life for people with lupus.

How can I find a clinical trial?

Update: We are no longer accepting comments on our site, but please share your thoughts on our Facebook page.

Lupus Coping Corner

Disclaimer: The information provided by the S.L.E Lupus Foundation is for educational purposes only and should not be used for diagnosing or treating a medical or mental illness, nor be a substitute for professional care. Consult your healthcare provider if you have or suspect you may have a medical or mental health problem.

Amy Caron, MPH is a lupus patient and Project Director of the Lupus Research Institute provider education initiative.  She is not a physician or counselor.  The suggestions shared in this column are strictly opinions from the perspective of a lay person with lupus. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care.

The S.L.E. Lupus Foundation does not provide any direct medical or psychological services nor recommend or endorse any particular treatment or therapy. The S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.