Emerging Treatment Could 'Significantly Improve' This Chronic Condition

Newsweek

11 hours ago

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A new study by the University of Virginia and Virginia Commonwealth University has found that a drug typically used in the treatment of heart failure has notable positive effects for patients with a common chronic illness.
The drug ivabradine has been on the market for years as a medication for heart failure, but more recently has been found to help patients with Postural Orthostatic Tachycardia Syndrome (PoTS).
Ivabradine became available in the U.S. about 10 years ago having previously been available in the U.K. and other countries, Dr. Svetlana Blitshteyn, professor of neurology at the University at Buffalo, told Newsweek.
Commenting on ivabradine's use, Professor Lesley Kavi, the chairperson of the U.K.-based charity organization PoTS UK, told Newsweek that U.K.-based PoTS specialists "have a lot of experience of prescribing it."
"It's often their first choice treatment if self management strategies are not sufficient and our experience as a charity is that patients find it very helpful," she added.
Some U.S. doctors have been prescribing the drug to PoTS patients for a number of years, with other studies noting its positive effect on patients—with one finding the drug had an 88 percent improvement rate on symptoms.
Other studies have found a marked improvement in symptoms for children with the condition, particularly an improvement on sudden losses of consciousness, lightheadedness and fatigue.
Therefore, while the drug is not new, nor newly prescribed to PoTS patients, the two Virginia universities' study—published in the Journal of Cardiovascular Pharmacology in July—adds to a body of research revealing the largely positive impact the drug can have on PoTS symptoms.
A file photo shows a medical professional monitoring a patient's heart rate.
A file photo shows a medical professional monitoring a patient's heart rate.What Is PoTS?
PoTS is understood as an abnormality in the functioning of the autonomic nervous system, the system controlling breathing, gut function, heart rate, blood pressure and many other bodily functions.
It results in a wide range of symptoms, particularly when standing, such as increased heart rate, chest pain, hot flushes, nausea, dizziness, feeling faint, headaches, tunnel or blurred vision and more.
As symptoms tend to persist when standing, the condition can have huge impacts on patients' lives, because many basic tasks require postural changes and standing.
Why this happens for patients with PoTS is still under investigation, but mechanisms, such as "low blood volume, abnormal blood flow, hyperadrenergic state, immunologic changes and small fiber neuropathy, may be among the reasons," Blitshteyn said.
Some research has also suggested PoTS is an autoimmune condition, Dr. Blair Grubb, a professor of medicine, pediatrics and neurology and director of the Cardiac Electrophysiology Program at the University of Toledo Medical Center, told Newsweek, adding it could be triggered by a viral infection.
PoTS is believed to affect millions of Americans—although exact estimates vary widely, which some experts believe is because it is under-recognized.
In the wake of the COVID pandemic, the condition has become more recognized as the prevalence of PoTS has been dramatically increasing.
"Post-COVID, nationwide, the incidence of PoTS went up fivefold," Grubb said.
While awareness is increasing, there is still a long way to go.
"It's very unfortunate because these people are mistreated and ignored, and I think the real reason is many of them are women," he said. "If this was a disease principally in men it would be taken more seriously."
"There is a real tendency in America to blame the patient for their illness and women are just ignored," he said, adding women were often passed off as being "hysterical" by some health care professionals.
Additionally, there are also not enough doctors treating the condition, Dr. Satish Raj, a professor of cardiac sciences, director of the Calgary Autonomic Investigation and Management Clinic, and director of education at the Libin Cardiovascular Institute, told Newsweek.
"Most specialized autonomic clinics have waiting lists of one year or more," he said.
"These patients require a lot of time to understand the issues and to iteratively try treatments," he added. "Health insurance does not pay well for talking to and assessing complex patients—they pay for procedures. This is not a procedure-intensive problem."
What The Study Found
In an analysis of 10 patients with PoTS, researchers found that ivabradine reduced their heart rate while "significantly improving" other symptoms.
The study revealed that participants' heart rate was significantly decreased after taking the drug—a change from a 40 beats per minute (bpm) increase on standing, to a 15 bpm increase.
Other symptoms were also eased by the drug, with patients reporting the greatest improvement in "feeling faint," which decreased by 69 percent after taking ivabradine, and "chest pain," which decreased by 66 percent.
The researchers said that the overall improvement in symptoms, via a reduction in heart rate, suggests that "the heart rate issue is an underlying driver of other PoTS symptoms."
The patients involved in the study had an average age of 28, with an age range of 21 to 36, and eight of the 10 participants were women. Three of the cases followed a viral illness, with two following a COVID infection.
While other drugs can reduce heart rate, the notable difference about ivabradine is that it does not affect a person's blood pressure. For PoTS patients, changes to blood pressure can exacerbate symptoms.
An "uncontrolled heart rate can contribute significantly to different symptoms in PoTS, so lowering heart rate definitely helps with overall symptoms control," Raj said.
He said that the lightheadedness and "feeling faint" that PoTS patients typically experience can "often be due to high heart rates and decreased filling time in the heart that can decrease blood flow," so lowering the heart rate can help with that—as well as easing symptoms like nausea, and occasionally headaches.
Kavi said that, while it is not fully understood, "it is likely that reducing heart rate a little improves the ability of the heart to pump and maintain blood pressure and blood supply to organs, thereby reducing other symptoms too."
What The Study Means For PoTS Treatment
PoTS patients are often prescribed beta-blockers for symptom management, and while these drugs can reduce heart rate and have a positive impact for some patients, they can also affect blood pressure.
This means that in some PoTS patients, beta-blockers can enhance dizziness and lightheadedness, as well as causing a number of other unwanted side effects.
Ivabradine could therefore be an effective alternative medication for PoTS patients who do not respond well to beta-blockers.
"Drugs like beta blockers can lower blood pressure and can make people feel lousy," Grubb said. "Beta blockers can make people feel depressed and terrible, but ivabradine lowers heart rate with no effect on blood pressure, so it's kind of the ideal drug."
Grubb said he has been using ivabradine in his clinic for PoTS patients for a number of years.
"It's an extremely valuable drug that we use, and it's actually become a first-line drug in treating our patients," he said.
However, given their positive effect for some patients, "beta blockers continue to be the first choice for treatment of PoTS and other forms of dysautonomia, in my experience," Blitshteyn said.
"Obviously, the more medications we have available for the treatment of PoTS, the better it is for patients," she said.
Blitshteyn added that ivabradine is also one of the medications being looked at in terms of post-COVID PoTS in the NIH-RECOVER Autonomic trials, a research program aimed at investigating, diagnosing and treating long COVID.
An Underrecognized Condition
While ivabradine has been around for some time, it has been approved for heart failure and not for PoTS, Raj said.
"It can be difficult for patients with PoTS to be able to get the medication approved by their insurance companies," he said, adding access is therefore "more limited than it should be."
Additionally, "education of medical students and doctors on autonomic disorders, including PoTS, is still lacking," Blitshteyn said.
As a result, PoTS can often be "misdiagnosed with anxiety, depression, panic disorder, anemia, dehydration and many others, so when a doctor doesn't know much about PoTS, they are most likely to misdiagnose it," Blitshteyn added.
"Psychological labeling is common especially in women and PoTS is much more common in women," Kavi said.
Doctors usually have limited time to spend with patients, Blitshteyn added, but patients with PoTS are "often complex, requiring time, effort, knowledge and understanding."
Kavi said that, since the COVID pandemic, "there has been an increase in awareness of PoTS by healthcare professionals, so more people are being diagnosed, although they often still have tortuous journeys to obtain a diagnosis."
"There is consequently more demand for specialist services but no significant increase in capacity," Kavi added.