Lupus

Posted on autoimmune conditions, Lupus, Rheumatoid arthritis

Chronic Diseases Misdiagnosed as Psychosomatic: A Hidden Crisis

Randomised crossover trial also finds that the benefits of 16-hour fasting are evident in as little as 3 days, even without restricting calories

Groundbreaking Study Unveils the Long-Term Impacts of Misdiagnosing Chronic Diseases

University of Cambridge

In the realm of healthcare, a significant gap often exists between the perspectives of clinicians and patients. This gap can lead to the misdiagnosis of autoimmune diseases like lupus and vasculitis as psychiatric or psychosomatic conditions, resulting in profound and lasting impacts on patients. A study conducted by the University of Cambridge sheds light on this critical issue, revealing the far-reaching consequences of such misdiagnoses.

Unveiling the Hidden Damage

The study, which involved over 3,000 participants including both patients and clinicians, uncovered the long-term physical and mental health impacts of these misdiagnoses. Often termed as “in your head” by patients, these incorrect diagnoses can severely damage patients’ trust in healthcare services and their overall wellbeing.

The Complexity of Autoimmune Diseases

Autoimmune rheumatic diseases such as rheumatoid arthritis, lupus, and vasculitis are chronic inflammatory disorders that affect the immune system and can cause damage to organs and tissues throughout the body. These conditions are notoriously difficult to diagnose due to the wide range of symptoms, many of which are invisible, like extreme fatigue and depression.

Dr. Melanie Sloan from the University of Cambridge led the study, which explored patient-reported experiences from two large groups of over 1,500 patients each, along with in-depth interviews with 67 patients and 50 clinicians. The findings, published in Rheumatology, highlight the critical need for greater awareness among clinicians about the symptoms of these diseases.

The Human Impact of Misdiagnoses

Patients who experienced misdiagnoses reported higher levels of depression, anxiety, and lower mental wellbeing. One patient recounted, “A doctor told me I was making myself feel pain, and those words have stayed with me, causing anxiety and depression.”

Over 80% of patients said their self-worth was damaged, and 72% reported that the misdiagnosis still affected them even decades later. These patients also reported lower satisfaction with medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services. One patient shared, “It damaged my trust and courage in telling doctors about my symptoms. I even stopped taking my immunosuppressive medicine because of those words.”

Rebuilding Trust and Understanding

Dr. Sloan emphasized the need for better education for clinicians to consider autoimmune diseases earlier in the diagnostic process. While some doctors admitted the difficulty of diagnosing these conditions, they also acknowledged the importance of regaining patients’ trust. One GP from England noted, “They lose trust in anything that anyone says, and it’s challenging to convince them that something is okay when a previous doctor was wrong.”

There is hope for rebuilding trust, as one patient described a positive experience after confronting a clinician about being “gaslit.” The clinician responded with empathy and understanding, transforming the patient’s negative experience into a more positive one.

Moving Forward

Mike Bosley, an autoimmune patient and co-author of the study, stressed the importance of understanding the long-term mental and emotional harm caused by misdiagnoses. He called for clinicians to listen carefully to patients and recognize the unique presentations of autoimmune conditions to avoid long-lasting harm.

The study authors recommend several measures to improve support for patients with autoimmune rheumatological diseases. These include discussing previous misdiagnoses with patients, offering targeted support, and ensuring greater access to psychologists and talking therapies. Additionally, educating clinicians to consider systemic autoimmunity when assessing patients with multiple, seemingly unconnected symptoms can reduce the risk of misdiagnoses.

Professor Felix Naughton from the Lifespan Health Research Centre at the University of East Anglia emphasized, “Diagnosing autoimmune rheumatic diseases can be challenging, but with better awareness among clinicians, we can hopefully reduce the risk of misdiagnoses and lessen the impact on patients.”

This study underscores the importance of accurate diagnoses and empathetic communication in healthcare. By bridging the gap between clinicians and patients, we can improve outcomes and rebuild trust in the healthcare system.

Posted on Lupus

Important News for Lupus Patients: Caution Advised on Steroid Use

Scientists have developed a novel approach to human learning through noninvasive manipulation of brain activity patterns.

A new study has shown that for lupus patients with pericarditis (a heart complication), it’s likely best to minimize the use of corticosteroid medicines. This study, involving over 2,900 patients, suggests that while steroids can help manage inflammation and pain, they may also increase the risk of recurrent pericarditis—a potentially dangerous inflammation of the heart’s protective sac.

The study, led by Johns Hopkins Medicine cardiologists and rheumatologists and funded by the National Institutes of Health (NIH), indicates that using fewer steroids could prevent recurrence. Their findings were published in JAMA Network Open on February 25th.

Pericarditis, which occurs in 15% to 30% of lupus patients, involves chest pain that can worsen when lying flat and improve when leaning forward. It can last from a few days to several months. Usual treatments include colchicine (an anti-inflammatory drug) and corticosteroids.

Dr. Luigi Adamo, Director of Cardiac Immunology at Johns Hopkins University and co-senior author of the study, highlighted the need for more information on the recurrence of pericarditis in lupus patients, given that pericarditis is a common cardiac complication in lupus.

The study analyzed data from the Hopkins Lupus Cohort, focusing on 590 patients diagnosed with both lupus and pericarditis. They found that 20% of these patients experienced recurrence, especially within the first year of onset. Younger patients and those with uncontrolled lupus were at higher risk. Importantly, the study noted that oral prednisone therapy, a common treatment, was linked to a higher chance of recurrence.

Dr. Andrea Fava, co-senior author and rheumatologist at Johns Hopkins, emphasized the importance of minimizing oral corticosteroid use in lupus patients and suggested exploring alternative strategies. The findings align with cardiology literature that associates corticosteroid use with increased recurrence risk in the general population.

For lupus patients, it’s crucial to discuss these findings with healthcare providers and consider alternative approaches to managing pericarditis. This study highlights the need for careful use of corticosteroids and continued research into safer treatment options.

Posted on Lupus

Topical Mupirocin Lowers Lupus Inflammation

Scripps Research scientists developed a compound that can block a protein previously considered challenging to drug and is implicated in autoimmune diseases, including lupus.

Systemic lupus erythematosus (SLE), commonly known as lupus, is a complex autoimmune disease that presents a variety of symptoms and poses significant challenges in treatment.

One common form of lupus is cutaneous lupus erythematosus, which manifests as rashes on the face, scalp, and other parts of the body, leading to hair loss and skin scarring. These rashes are caused by inflammation resulting from the immune system attacking the body.

Traditional treatments for cutaneous lupus erythematosus involve immunosuppressants and biologic drugs to reduce inflammation. However, many patients with lupus already take multiple medications and are seeking alternative treatments.

A research team led by Dr. J. Michelle Kahlenberg, a professor of internal medicine at the University of Michigan Health, has been exploring one such alternative: a topical treatment called mupirocin. This study builds on Dr. Kahlenberg’s previous discovery that cutaneous lupus rashes are often colonized by a common skin bacteria, Staphylococcus aureus (staph), which contributes to inflammation.

Mupirocin is known to kill staph bacteria. In the study, patients with SLE who were experiencing cutaneous lupus flares were randomly selected to treat their skin lesions with either mupirocin or an inactive control, petrolatum jelly. Samples from the nose and affected skin were analyzed before and after treatment to measure staph levels and microbial community profiles.

Results showed that mupirocin treatment significantly decreased staph levels in the affected skin, which corresponded with a reduction in inflammatory signals, including interferon-driven gene expression. Dr. Kahlenberg noted that mupirocin also lowered skin monocyte levels, which are crucial in driving cutaneous lupus.

While these findings indicate that mupirocin can reduce inflammation, the study did not determine whether it can completely eliminate the rashes associated with cutaneous lupus erythematosus. Dr. Kahlenberg emphasized the need for larger studies to evaluate the effectiveness of topical antibiotics in treating these rashes.

Despite the need for further research, this study marks an exciting first step toward discovering additional treatments that can reduce inflammation beyond the conventional use of immunosuppressants and biologic drugs.

Posted on autoimmune conditions, Lupus, Multiple Sclerosis

Breakthrough Discovery: Key Protein Could Halt Autoimmune Diseases and Allergies!

Autoimmune disease awareness
Autoimmune disease awareness

In an exciting discovery, Houston Methodist researchers have identified a crucial protein that could pave the way for new treatments to stop the body’s immune system from mistakenly attacking itself. This groundbreaking finding brings hope for those suffering from autoimmune diseases and allergies.

The Key Protein: Apex1

The study, recently published in the Journal of Clinical Investigation, reveals that a protein called Apex1 plays a vital role in protecting the DNA of immune cells. These immune cells, known as “killer” T cells, can mistakenly attack the body, leading to autoimmune diseases and allergies. Researchers believe that targeting Apex1 with chemical inhibitors can block this harmful process, potentially preventing and treating these conditions.

Surprising Results

Dr. Xian C. Li and Dr. Zhiqiang Zhang, the lead researchers, found that blocking Apex1 prevented multiple autoimmune diseases and treated them even after they were established. One remarkable finding was the extensive death of harmful T cells when Apex1 was inhibited, showing the protein’s critical role in the destructive autoimmune process.

Promising Outcomes in Disease Models

The research team tested their approach in various disease models, including lupus and multiple sclerosis. In mice prone to a lupus-like disease, deleting the Apex1 gene prevented the onset of symptoms, such as kidney damage and harmful autoantibodies, resulting in long, healthy lifespans. The control group, which retained the Apex1 gene, developed severe symptoms and died within 24 weeks.

A New Hope for Patients

Dr. Li emphasized the potential of targeting Apex1 for treating diseases like lupus, multiple sclerosis, and allergies, where destructive T cells are involved. By eliminating these harmful T cells through Apex1 inhibition, researchers believe they have found a highly effective and precise treatment method with minimal side effects compared to existing therapies.

Next Steps

The next phase of research will involve designing chemical compounds to selectively target Apex1 and conducting further testing in clinical trials. The ultimate goal is to develop new protocols and therapies for patients, including those undergoing organ transplants, to ensure long-term survival and improved health outcomes.

This discovery marks a significant step forward in the fight against autoimmune diseases and allergies, offering hope for millions of patients worldwide.

Posted on Lupus

New research provides insights into why COVID-19 vaccines are less effective in lupus patients

Katie Faliti

Katia Faliti, PhD, lead author of the study and an instructor in Emory University’s Department of Medicine Credit Emory University

A study from Emory University has revealed why mRNA COVID-19 vaccines are less effective in people with autoimmune diseases like lupus. This discovery suggests that lupus patients might need tailored vaccination strategies to enhance protection against COVID-19.

Why is this important? Lupus is a chronic disease where the immune system mistakenly attacks the body’s tissues, causing pain and inflammation. Understanding how vaccines work in lupus patients can help improve protection for this vulnerable group.

Study Findings Researchers found that mRNA COVID-19 vaccines in lupus patients do not generate the same level of protection as in healthy individuals. They discovered a new type of immune cell, called DN2 B cells, which is more common in lupus patients and linked to poor vaccine response. These cells make it harder for lupus patients to develop strong immunity against COVID-19.

Impact on Lupus Patients In healthy people, the vaccines create antibodies that effectively fight the virus. However, in lupus patients, about 10-30% of them do not produce these protective antibodies. Instead, they have higher levels of DN2 B cells, associated with poor vaccine response and more severe disease.

Future Directions The researchers suggest that lupus patients might need customized vaccines or additional booster shots to improve their protection against COVID-19. They also believe these findings could apply to other autoimmune diseases and help create better vaccination strategies for these groups.

Next Steps The team plans to conduct further studies to understand how to better support the immune response in lupus patients and explore new ways to improve vaccine effectiveness.