As a science journalist, I’ve written for years about the research of Stanley Rockson, MD, a Stanford expert on lymphedema, a little-known but widespread disease that causes painful, unsightly swelling of the limbs. But I’ve never heard him quite so excited as he was about his most recent scientific publication. As I described in my story on the study, which published last week in JCI Insights, researchers found that an anti-inflammatory drug called ketoprofen works to ease symptoms of the disease.
This discovery is particularly exciting because no cure exists for lymphedema, and there are currently no medical treatments available. Patients spend decades getting physical massage therapy, using electric pumps nightly and compression hose every day to to try to control the swelling and prevent infections.
As Rockson, who has treated thousands of lymphedema patients, told me, “It’s very rare in the lifetime of any clinical scientist to see his research actually result in changing things for patients.” He added:
So many patients have gone through decades being told there is no medical treatment. Now, they can go to a drugstore and get a pill with a doctor’s prescription. This new treatment doesn’t cure lymphedema, but our studies show it has the capacity to make the illness more livable, more workable.
In two small clinical trials both described in the paper, Rockson, co-investigator Mark Nicolls, MD, and colleagues found that a six-week treatment of dozens of patients with lymphedema showed the restoration of the health and elasticity of the skin. Rockson said he also believes ketoprofen, an NSAID in the same drug class as ibuprofen, reduces recurrent infection and swelling, although these symptoms weren’t measured in the study.
I interviewed one of the participants in the trial, Lisa Hanson, who told me the drug has been life changing. As I explain in my story, she continued to take the drug for years following the end of the trial and is excited to tell other people with lymphedema about it:
‘Over time, the swelling has gone down,’ Hanson said. ‘It’s not a cure. It doesn’t make it go away, but it has been easier to take care of my leg.’ She still wears the compression stockings, but they’re much easier to tug on, and the nightly pumping now takes just a fraction of the time it used to.
“For a long time I couldn’t talk to people about my lymphedema without crying because it’s something weird and obscure,” Hanson told me. “Now there is hope for people like me with this disease.”
Hanson, like other participants in the trial, was warned by researchers that past studies have shown gastrointestinal and cardiovascular side effects from long-term use of ketoprofen in some patients. But she still chose to keep taking the drug because, as she said, “For me, the choice of being comfortable and not having so much burden in terms of care is a much greater benefit and outweighs the risk.”
Meanwhile, Rockson and Nicolls are also exploring the use of another anti-inflammatory drug called bestatin (also known as ubenimex) for the treatment of lymphedema. They were involved in a clinical trial that was recently halted by the company due to insufficient evidence that the drug was working, but both Rockson and Nicolls believe that the data collected warrant further analysis. They’ll undertake these analyses at Stanford and plan to continue further studies of ubenimex as a possible safer or more effective alternative to ketoprofen.