BERLIN—Dealing with the symptoms of connective tissue disease is a traumatic experience for patients, but taking an assertive role in your own medical care is important if you want to get the best care, an expert said here at the European League Against Rheumatism (EULAR) 2012 Annual European Congress of Rheumatology, held June 6–9.
Alan Tyndall, MD, professor and head of the department of rheumatology at University Hospital in Basel, Switzerland, offered guidance for patients at a session on less-common disorders—a session that was geared toward a patient audience but that also offered useful insights for physicians.
Tightrope Between Fear and Assertiveness
“Don’t accept things that don’t seem right to you,” Dr. Tyndall said. “Don’t be lulled into simplistic explanations.”
Getting a second opinion is often a good idea, but too much information can become a problem. “Multiple opinions can be very confusing,” he said.
Throughout the talk, Dr. Tyndall related comments made from patients themselves. They ranged from the confusing period for an early lupus patient (“I thought the rash was some allergy, that the joint pains and difficulty concentrating were stress”), to apprehension over therapies (“I heard that biologics increase the risk of infection and cancer and don’t always work. I was too scared to try them”), to adapting to physical changes caused by dermatomyositis (“Instead of always thinking back about how I was, I suddenly realized that how I am is OK for the people who matter to me”).
Dr. Tyndall offered encouragement to those who might be at risk of despair. “All clinical symptoms are a spectrum of severity,” he said. “And early diagnosis really does control most patients.”
Keeping early track of symptoms can go a long way toward good long-term results, he said. “Your disease does not have to be completely cured,” he said. “It can just be controlled, and that’s enough. And we can do that with biologics.” But he also cautioned that not all biologics work for all patients, so a “structured and balanced” plan of therapy should be tailored for each patient.
Kirsten Lerstrom—vice-chair of Lupus Europe, which oversees 23 national organizations—said lupus is such a multifaceted disease that the difficulty lies on both sides, in managing it and living with it.
SLE can be particularly difficult because of the timing—patients are often diagnosed in their mid-30s. “It’s at a time where you’ve finished your education and starting a career and you’re starting a family,” Lerstrom said. “And you can get hit with a disease that leaves half of the people, perhaps, out of work.”