How to Choose the Best Rheumatologist 

By Dr Thomas, author of The Lupus Encyclopedia. He is posting a 15+ series on how 2 choose the best rheumatologist-

Dr. Thomas Google Plus Article HERE



Lupus Study-Shocking High # of Wrong Dx’s


from Lupus Foundation of America:  Original Article Here

A Lupus Foundation of America study of over 3,000 adults with lupus found that 46.5 percent report being misdiagnosed with something other than lupus at the start of their journey with this unpredictable and life-altering disease. Additionally, more than half (54.1 percent) were told that there was nothing wrong with them or that their symptoms were psychological.

The data was included in a cross-sectional study, “Lupus Diagnosis: Process and Patient Experience,” released by the Lupus Foundation of America today at the American College of Rheumatology (ACR) Annual Scientific Meeting (ACR) in San Diego. The study demonstrates the urgent need to shorten the time to obtain an accurate diagnosis – so people with lupus can begin critical treatment that will reduce damage to vital organs, such as the kidneys, heart, lungs and brain.

Previous studies have shown that it takes nearly six years from the time people with lupus first notice symptoms until they obtain a correct diagnosis. Damage caused by lupus increases the likelihood of developing long-term health complications, making early diagnosis crucial for people with lupus – an important strategic objective of the Lupus Foundation of America.

“This study is so valuable because it’s the first in-depth look at the patient diagnostic experience,” said R. Paola Daly, Director of Research at the Lupus Foundation of America. “The results of this study will help us understand and in-turn, prevent the specific factors that lead to unacceptable delays in receiving a lupus diagnosis.”

Through this study, the Lupus Foundation of America sought to identify barriers that impede lupus diagnosis and ways to improve its accuracy. Nearly 40 percent of those with lupus waited more than one year from the onset of symptoms to receive an accurate diagnosis. These findings underscore the importance of providing continuing medical education about lupus symptoms to both primary and specialty healthcare providers.

During the ACR Meeting (November 3-8), the Lupus Foundation of America will conduct on-site Facebook Live interviews with lupus researchers and other health professionals about the findings from their research studies. More than 35 Lupus Foundation of America funded researchers will be presenting on findings from their lupus studies. To learn more about the Facebook Live interviews, visit our Facebook event.

Kool Lupus Stuff!


New Study Confirms That Stress & exercise Both Affect #LUPUS in Opposite Ways


#LUPUS Study: “Cardiac Tamponade is Common but Treatable”

#LUPUS Study: “Cardiac Tamponade is Common but Treatable in Lupus Patients” via #LNT #HeartOfLupus

Original Article via Lupus News Today Here

Cardiac tamponade, the accumulation of fluid around the heart, affects nearly 6 percent of lupus patients in India, a new retrospective study shows.

But researchers found new risk factors that predict this condition, which may help identify patients at risk. Treatment with high-dose immunosuppressives reduced the risk for fluid reaccumulation and the need for surgery in these patients, the team reported.

The study, “Cardiac tamponade in systemic lupus erythematosus,” was published in QJM: An International Journal of Medicine. It was conducted by researchers at the Institute of Post Graduate Medical Education and Research in Kolkata (IPGMER), in India.

Lupus is an autoimmune disease that affects several organs, including the heart. Pericarditis, an inflammation of the layers surrounding the heart, is the most common heart manifestation of the disease, affecting 9% to 54% of lupus patients. While it has a lower incidence (less than 2.5%), cardiac tamponade may also manifest.

Cardiac tamponade is characterized by the accumulation of fluids in the space between the heart and its protective membranes, leading to heart compression and low pumping capacity. But despite its severity, little is known about cardiac tamponade in lupus patients.

In a study led by Rudra Goswami, a post-doctoral trainee in the Department of Rheumatology at IPGMER, researchers evaluated the incidence of cardiac tamponade, its clinical features, potential risk factors, and treatments in a cohort of Indian lupus patients.

The study included 409 lupus patients. Among them, 25.4 percent had pericarditis and 5.9 percent had cardiac tamponade.

Patients with tamponade were older and had later lupus onset, compared to the remaining lupus patients. All 24 patients with cardiac tamponade experienced shortness of breath; 12 had increased jugular venous pressure; 11 had chest pain; and eight had low blood pressure.

All patients with cardiac tamponade had accumulations of liquid around the heart (pericardial effusion), 14 with large effusion, seven with moderate effusion, and three with small effusions.

They showed higher prevalence of pleuritis, which is an inflammation of the membrane surrounding the lungs, inflammation of the pancreas, and were more prone to present anti-nucleosome antibodies, a biomarker of lupus.

Additional analyses confirmed that pleuritis, anti-nucleosome antibodies, and the size of effusion were all predictive of cardiac tamponade in lupus patients.

All patients underwent aspiration to remove the accumulated liquid. Three patients required more than one aspiration due to re-accumulation of liquids, and only one required surgical treatment. The majority of patients received corticosteroids and immunosuppressive drugs, which were found to be effective in preventing progression of cardiac symptoms and reducing the need for surgery.

“We made a few important observations, such as the importance of concomitant pleuritis and anti-nucleosome antibody positivity in addition to size of pericardial effusion as predictors of tamponade,” the researchers wrote.

“We also feel that immunosuppression with methylprednisolone and IV cyclophosphamide are essential, especially to reduce risk of reaccumulation and surgery,” they added.

No Limits, But Know Limits

This is a classic if you’re living with chronic illness. ICUMI or need a little inspiration, read it again. (& again) & follow Tala on Periscope at @Tala_NoExcuses

Tala's Tracks

Einstein said, “Once we accept our limits, we go beyond them.”  I won’t boast to think that I know what precise meaning he attached to these words, but I can discuss what it means to me.

In social media, I use the hashtag #NoLimits a lot.  It is meaningful after being told what my limitations were and what I could no longer do after certain injuries and health conditions entered the picture.  My friends and close followers have seen me throw down in more than one social media scrap over this topic too, and probably more of them in recent months.  As I continue to claw my way back into capabilities and strengths, I find it an even greater offense for anyone to try to put us “defectives” in a closed box.  (Please don’t get mad at me for using the word “defective” here and there… it’s a reference to the…

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