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LUPUS - SLE Awareness Campaign

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LUPUS - SLE Awareness Campaign

This page will focus on spreading awareness to address SLE misdiagnosis/delayed diagnosis. This page is started by a SLE patient.

While this page started as an academic project at Columbia University, it's scope and potential impact on lives of SLE patients calls for sustained efforts to provide accurate, evidence driven, medical and scientific information on an ongoing basis. This page is not opinion-driven but is a synthesis of published scientific data. Accurate sources will be provided where applicable.

01/28/2022

A 2020 UK study: “But you don’t look sick”.

Previous research and findings have indicated that delays in diagnosis can lead to a number of negative health outcomes including long-term organ damage and physiological damage and insecurity.

This 2020 study analyzed overarching themes of invalidation (in multiple domains) - uncertainty, medical (mis)communication and misunderstandings, navigating health systems and resilience and support.

SLE is often referred to as an “invisible disease” and both medical and social diagnosis rely upon visual indicators of disease before symptoms are validated. It is established that lack of consideration for “subjective symptoms” impacts patients negatively and leaves them disbelieved and dismissed.

In short, SLE diagnostic journeys can be very chaotic.

The overarching theme of “chronic invalidation” among patients who often felt poorly served and damaged by the healthcare system, lack of knowledge among physicians and society.

Improved support and understanding for patients with unexplained symptoms is an urgent requirement.

The study also highlights the need for and importance of “earlier diagnosis, cross-specialism support and empathetic communication”.

Source: https://link.springer.com/article/10.1007/s00296-020-04726-x

01/18/2022

2014 German study:
Lupus and Autoimmune Hepatitis - Elevated liver enzymes in SLE

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Lupus affects various organs.. Although co-occurrence of autoimmune hepatitis (AIH) and SLE is considered to be rare, liver involvement is seen in upto 60% of the SLE patient population.

According to the study, it was found that elevated IgG, antinuclear antibodies (ANAs), Anti-double stranded DNA (anti-dsDNA) antibodies are found in both AIH and SLE; there are few serological markers, which are highly specific for AIH.

Specific markers for AIH, which usually do not occur in SLE, are
- Soluble liver antigen (SLA),
- Liver-pancreas, smooth-muscle antibody (SMA) with specificity for F-actin and microsomal autoantigens, such as anti-liver kidney antibodies (anti-LKM antibody).

While these serological biomarkers may help to identify occurrence of AIH, liver histopathology represents the key feature that helps to distinguish AIH in SLE from nonspecific hepatic involvement in SLE.

AIH liver histopathology shows characteristic lesions, such as:
- interface hepatitis,
- rosetting of hepatocytes,
- emperipolesis and,
- consecutive to inflammation - fibrosis.

This study concluded that AIH needs to be considered in the differential diagnosis for SLE patients with elevated liver enzymes, and liver biopsy should become mandatory in such patients.

Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4168105/

12/29/2021

Last few days have been tough and rough. Lupus flares don’t inform and come. Everyday is so unpredictable. From swollen and painful joints to body aches, recurrent waves of nausea, and headaches; it is not easy to live with SLE.

In the midst of all this, this post is to say a hearty THANK YOU to all of you who find this page informative and who engage with its content. Thank you for supporting this effort to address a crucial public health issue. More evidence-based posts soon.

Wishing you all a Safe and Happy Holiday Season and a Happy New Year.

12/26/2021

A 2021 UK study - Lupus and high health-care costs

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Health-care utilization (primary care, hospitalizations, outpatient visits and prescription drugs) and associated costs among SLE patients is substantial, remain high even after diagnosis and increases with increasing severity and disease-activity.

The study indicated that among participants,
- 3 years before diagnosis, health-care costs increased substantially.
- Over a 3-year pre-diagnosis period, patients with moderate to severe SLE incurred greater health-care costs as compared to patients with mild SLE.
- A year after diagosis, the costs doubled for patients with moderate to severe SLE.

Data from this and other studies found that these medical costs were largely associated with inpatient hoospitalizations, primary care utilization, prescription medications, increasing need to manage co-morbid conditions and SLE disease-activty.

Overall, this study demonstrated that health-care costs are most pronounced in patients with moderate to severe SLE. The greater the organ damage, the more is the health-care resource use.

Early diagnosis and treatment can reduce the onset of irreverisble organ damage and co-occurence of overlapping conditions that can lead to cost savings and reduce high healthcare costs.

Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8493101/

12/24/2021

A 2019 US Study: Lupus and fatigue

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The study evaluated fatigue among Lupus patients without concurrent fibromyalgia. And highlighted the importance of determining areas of intervention to improve symptom burden and overall quality-of-life among Lupus patients.

The six contributory variables to fatigue that were examined were disease activity, insomnia, depression, stress, pain, and physical health.

Stress, depression and pain were found to be the largest independent contributors to fatigue. Evaluation of these variables should be included during assessments of Lupus patients, and treatments for fatigue should be more inclusive within Lupus treatment and therapy.

The study recommended an integrative model that involves screening for stress and depression into usual care for Lupus patients to address issues related to chronic fatigue.

Source: https://pubmed.ncbi.nlm.nih.gov/30580659/

12/22/2021

2003 Canadian Study: Organ damage due to corticosteroid therapy among SLE patients.

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The study investigated the accrual of organ damage among SLE patients and adverse impact of corticosteroid therapy over longer periods of time.

This study also highlighted 3 patterns of organ damage accrual in SLE patients who survived at least 15 years.

1. First pattern: One of the most common complications of prolonged corticosteroid therapy.

- Progressive increase in osteonecrosis (breakdown of bone cells)
- Cataracts (cloudy area in the lens of the eye that decreases vision).

2. Second pattern: A consequence of prolonged corticosteroid therapy along with ongoing inflammation leading to:
- Atherosclerosis (plaque buildup in arteries)
- Cognitive impairments.
- Cardiovascular damage
- Neuropsychiatric damage accrual with peaks at 5 and 15 years.

3. Third pattern:
- Musculoskeletal system damage was the most common in all SLE patients contributing to osteonecrosis, osteoporosis and deforming arthritis.

Damage in both early and late SLE can be attributed to corticosteroid therapy.

According to this study, in the early course of the disease, damage related to corticosteroid therapy was lower but contributed most of the damage at 15 years of disease.

Source:https://www.jrheum.org/content/jrheum/30/9/1955.full.pdf

12/20/2021

2016 Greek Study: Adverse outcomes of delayed SLE Diagnosis

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The study indicated that strict adherence to SLE classification criteria (ACR OR SLICC) used for diagnosis can delay diagnosis in about 20-30% of the patients.

Furthermore, the study highlighted:
- that some patients, including patients with organ involvement, may develop SLE disease manifestations for years before fulfilling the classification criteria.
- that some patients can have typical SLE symptoms but have low-positive or negative antinuclear antibody (ANA) results.
- the clinical issue of patients with major organ involvement seen by clinicians who are not SLE experts leading to substantial delays in the initiation of treatment and affecting health outcomes.

This study proposed an approach that considers both
- the classification criteria and
- common sense and clinical experience.

Overall, this study showcased:
- the heterogeneity of SLE, both clinically and biologically and
- that SLE diagnosis can pose a serious challenge, especially for clinicians with limited expertise.

It is important to identify, recognize and understand SLE symptoms. Please be aware and don’t ignore your symptoms.

#

Source:https://www.ima.org.il/FilesUploadPublic/IMAJ/0/226/113373.pdf

12/18/2021

2021 British Study - Impact of SLE disease activity and severity on diagnosis and treatment plan.

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The study was conducted to describe disease-activity and severity in SLE patients and its impact on diagnosis and treatment plan.

This study found that SLE-related comorbidity affects multiple organ systems and it shortens the time to first flare.

As per the findings, it takes an average of

12/17/2021

A Lupus focused test.

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Lupus is a multifaceted autoimmune condition and it’s diagnosis is quite challenging. A study conducted in 2016, demonstrated the use and importance of the Avise Lupus test, a blood test for the diagnosis of SLE.

The Avise Lupus test was developed to address the limitations of regular diagnostic tests for SLE that measure autoantibodies (ANA, anti-dsDNA, and anti-Smith).

This test has high sensitivity and specificity, and includes objective measurement of cell-bound complement activation products (CB-CAP’S) and autoantibodies associated with Connective Tissue Diseases (CTDs).

This test showed excellent performance characteristics and had much higher sensitivity than the American College of Rheumatology (ACR) score.

Timely diagnosis is important. It not only prevents organ damage and other complications but also impacts patient management and overall quality-of-life.

Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5101629/

12/16/2021

An Omani Study on SLE Diagnosis

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Around 60 SLE patients participated in this Omani study that investigated frequency and significance of some antinuclear autoantibodies, Antinuclear antibodies (ANA), anti-double stranded-DNA (anti-dsDNA), and anti-Smith (anti-Sm) autoantibodies. The study found the following percentages of serological biomarkers in the 60 patients:

98.3% - Seropositive for ANA.
83.3% - Seropositive for Anti-dsDNA and Anti-Sm antibodies
50% - Homogenous pattern of ANA
26.7% - Fine speckled ANA
10% - Coarse speckled ANA
93.3% - High titers (≥1:320) of ANA
33.3% - High titers of anti-Sm
66.7% High titers (>100 IU/ml) of anti-dsDNA

Overall, this study indicated that:
- anti-Sm is as important as the anti-dsDNA to confirm SLE diagnosis
- anti-Sm occurs at a much higher frequency (83.3%) that indicates the importance of this specific autoantibody for early diagnosis in SLE.

Source: https://link.springer.com/article/10.1007%2Fs00296-009-0909-4

12/14/2021

Raynaud's phenomenon - Malar rash - Pleuritis - Pericarditis

Lupus Terminology helps better understand and effectively communicate; key first steps in self-empowerment and awareness.

12/14/2021

Flare-Remission-Biomarker

Lupus Terminology helps better understand and effectively communicate; key first steps in self-empowerment and awareness.

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