Lies, Lupus

The Good, The Bad and Partial Information About Pulmonary Hypertension in Lupus Patients

wanda writes about lupusI admit I know a little bit about pulmonary hypertension. My knowledge comes from a patient I knew and from my curiosity and willingness to ask anything when I have the chance. Today I know more about this aspect of lupus due to a new study.

A few years ago a young lady came in to the office at The Lupus Support Network seeking information. She was a beautiful, young, African American, twenty-eight years old. We became friends of a sort with her dropping by to chat once or twice a week. Shortly after she stopped coming by I learned that she had died of pulmonary hypertension. At that time I thought PH (pulmonary hypertension) was similar to high blood pressure (hypertension). I couldn’t have been more wrong.

A few years later we had the opportunity to have a rheumatologist speak at one of our support groups. It was there that I had the opportunity to ask what the difference was between hypertension and PH. He explained that hypertension is an increased pressure in the arteries of the body and PH is an abnormally high blood pressure in the pulmonary arteries that supply blood to the lungs. Both are dangerous, but PH leads to vascular remodeling, difficulties in breathing, chest pain, right-sided heart failure and eventually death.

A new study conducted by the Catholic University of Korea in Seoul found that 7.8% of lupus patients have PH. The study was recently published in the International Journal of Rheumatic Diseases and is entitled “High levels of uric acid in systemic lupus erythematosus is associated with pulmonary hypertension.”

The importance of this study is not just how many lupus patients have PH, but that in these patients serum uric acid was found to be significantly higher in comparison to those without the condition. This little finding can now be used to help determine patients with PH, leading to earlier intervention, which may save lives. An excess of uric acid (hyperuricemia) is not common in SLE patients except in cases of renal insufficiency or the use of particular medication. The research team believes that pulmonary hypertension might set up a favorable environment for the production of uric acid. Interestingly, researchers found that at a cutoff level of 6.5 mg/dL, serum uric acid had a reasonable accuracy as a predictor of pulmonary hypertension in SLE patients (sensitivity of 66.7% and specificity of 96.2%).

While all of this is good news for lupus patients, I am personally appalled at how some of this information was reported. The original headline I saw was More Than 1 in 10 LUPUS Patients Have Pulmonary Hypertension – Renal and Urology News. Reading farther I saw a sub-headline that read – (HealthDay News) — About 8% of patients with systemic lupus erythematosus (SLE) have pulmonary hypertension (PH), and serum uric acid (UA). In reality, the article states that only 7.8% of lupus patients have PH. While the difference between 1 in 10 and 7.8 percent may seem small, only those that go on to read the entire article will know the actual number of 7.8%.

I have to ask was the 1 in 10 figured used as a frightening figure to grab attention? Who wrote that figure as compared with the actual 7.8%? And where did 8% come from?

I have taken pointing out errors in reporting on lupus as part of my job in advocating for lupus patients. Things like this may appear small but in fact they are frightening to patients, loved ones, and anyone involved in educating patients about the disease. I don’t like attention grabbers. I don’t like people who misreport the facts. I don’t like those who try to use information to their benefit when it is to the detriment of lupus patients.

We can be happy about this study and the findings, and at the same time be disappointed about the misrepresentation of the statistics. Let’s celebrate the good news, and keep our eyes open for misreporting and incorrect information. Never believe what you read until you have checked the facts and the source.

From the lupus life of Wanda M. Argersinger

© 2015 All Rights Reserved

Leave a Reply

Your email address will not be published. Required fields are marked *