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Welcome to My Story Living With Lupus. Here you will find valuable information and resources to help you navigate your journey with lupus. Our goal is to provide support, education, and empowerment to individuals living with lupus. We understand that living with lupus can be challenging, but you are not alone. Join our community, share your story, and connect with others who understand what you're going through. Remember, this information is not intended to replace your doctor's advice. Always consult with your healthcare provider and follow their guidance.

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Selfcare

THE IMPORTANCE OF KEEPING YOUR BODY MOVING THROUGH EXERCISE.

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WHAT’S TRENDING? SEE WHAT IS TRENDING IN THE LATEST RESEARCH FOR LUPUS.

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RESOURCES THAT ARE AVAILABLE TO YOU.

New research highlights mental health support gap for autoimmune disease patients

Research by the University of Cambridge and King’s College London has suggested that the range of mental health and neurological symptoms is much wider than previously reported, as half of the patients with systemic autoimmune rheumatic diseases (SARDs) involved in the study had rarely or never reported their mental health symptoms to a clinician.

With SARDs, connective tissues such as cartilage, joint synovium and skin are more frequently targeted, as seen in conditions such as systemic lupus erythematosus, rheumatoid arthritis and systematic sclerosis.

In the Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases study, the team surveyed neurological and psychiatric symptoms in 1,853 patients with SARDs. Almost 290 clinicians, mostly rheumatologists, psychiatrists and neurologists, were also surveyed and 113 interviews with patients and clinicians were conducted.

The team asked about 30 symptoms, including fatigue, hallucinations, anxiety and depression. Among the patients in the study, which was funded by the Lupus Trust and LUPUS UK, experience of most of those symptoms was found to be very widespread.

Approximately 55% of SARD patients experienced depression, 57% experienced anxiety, 89% experienced severe fatigue and 70% experienced cognitive dysfunction.

They also noticed a contrast in symptoms between patients and clinicians estimates: 47% of lupus patients reported that they were experiencing suicidal thoughts, compared to the 15% estimate by clinicians.

Dr Tom Pollak from the institute of psychiatry, psychology and neuroscience, King’s College London, said: "This study paints a startling picture of the breadth and impact of these symptoms. Everyone working in healthcare with these patients should routinely ask about mental well-being, and patients should be supported to speak up without fear of judgement."

Many patients in the study also expressed hesitancy about reporting mental health problems to clinicians. Patients said that when they did share their mental health symptoms with clinicians, they were often not commented on or documented correctly, if at all.

Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge said: "The low level of reporting […] identified is a major concern as problems with mental health, fatigue and cognition can be life-changing, and sometimes life-threatening.”

She added: "It’s only by fully engaging patients in their healthcare and by asking them for their views that we will be able to determine the extent of these often-hidden symptoms, and help patients get the understanding, support and treatment they need."

Reference

PMLive 2023

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There may be no better way to communicate the impact of how lupus can change ones life. It is stated that "A picture is worth a thousand words." As you browse our site, take a few moments to let your eyes linger here, and see if you can get a feel for how lupus can affect individuals differently.

Latest In Healthcare News

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Primary care team

RHEUMATOLOGIST SHORTAGE

In March  2015, the American Academy of Family Physicians released a report that indicated the United States would experience a shortage of between 46,000 and 90,000 physicians by 2025. The American College of Rheumatology defines a rheumatologist as "an internist or pediatrician who received further training in the diagnosis (detection) and treatment of musculoskeletal disease and systemic autoimmune conditions commonly referred to as rheumatic disease.  These diseases can affect the joints, muscles and bones causing pain, swelling, stiffness and deformity." 

The Journal of Arthritis & Rheumatology, examined the educational system and how its current arrangement wont be able to graduate enough new rheumatologists to keep up with demand for this type of care.

Couple that rising demand with the fact that many doctors currently practicing in the field of rheumatology are nearing retirement age themselves, and you start to see the scope of the predicament.

Reference

U.S. News & World Report (2018),

https://health.usnews.com/health-care/patient-advice/articles/2018-04-04/what-can-be-done-about-the-growing-shortage-of-rheumatologists

Doctor adjusting balance on weighing sca

OBESITY, DISEASE ACTIVITY PARADOX FOUND IN SLE

Meeting showed an inverse correlation between body mass index (BMI) and disease activity in systemic lupus erythematosus (SLE) after adjusting for use of prednisone.  "This is the first evidence to our knowledge of an obesity paradox in systemic lupus," the researchers wrote.

To study how BMI changes would affect disease activity, reseachers examined 2406 patients in a prospective SLE cohort, assessing their weight at each visit.  Patients were categorized into 5 groups according to weight: low (BMI ,20kg/m2), normal weight (reference; BMI 20-24.9 kg/m2),overweight (BMI 25-29.9 kg/m2), obese (BMI 30-34.9 kg/m2).

Reference

Stojan G, Fu W, Petri M. Body mass index and disease activity in systemic lupus erythematosus-a paradoxical relationship? Presented at ACR/ARHP 2017 Annual Meeting; November 3-8, 2017; San Diego, CA. Abstract 1634.

Doctor reviewing chart

CHARACTERISTICS OF EARLY-ONSET SLE DISTINGUISHED FROM MIMICKING CONDITIONS

Patients with early SLE had higher rates of unexplained fever than those with SLE-mimicking conditions. Clinical manifestations differentiating early-onset systemic lupus erythematosus (SLE) from SLE-mimicking conditions have been identified, according to a study recently published in Arthritis & Rheumatology.

This study included 389 individuals with SLE and 227 with conditions that mimicked SLE.  Baseline  data were collected using Academic Lupus Centers located in 4 continents and included individuals who had been referred for potential SLE within the past 3 years with less than 1 year of symptoms.

Reference

Mosca M, Costenbader KH, Johnson SR, et al. How do patients with newly diagnosed systemic lupus erythematosus present? A multicenter cohort of early systemic lupus erythematosus to inform the development of new classification criteria [published online July 23, 2018]. Arthritis Rheumatol. doi: 10. 1002/art.40674

Woman with depression

DEPRESSION TIED TO DOUBLE THE RISK FOR LUPUS IN WOMEN

A history of depression is associated with more than double the risk of developing systemic lupus erythematosus (SLE) among women, new research suggests.

The study, which included data from almost 200,000 participants in the Nurses' Health Study ll (NHS ll), supports the hypothesis that depression is a causal risk factor for developing SLE, note the investigators.

Reference

JAMA Psychiatry. Published online September 12, 2018. Abstract

Retreived from: https://www.medscape.com (October 01, 2018)

Press Coverage

ARTICLE HEADLINEHEALTH PROPOSALS IN PRESIDENT’S BUDGET WOULD REDUCE HEALTH INSURANCE COVERAGE AND ACCESS TO CARE

The health policies in the President's fiscal year 2019 budget are a continuation of the Administration's health care agenda of the past year. Throughout 2017, the President pressed Congress to enact legislation repealing the Affordable Care Act (ACA) and making deep cuts to Medicaid. Meanwhile, the Administration is using waivers and regulatory changes to implement (and allow states to implement) policies that make it harder for eligible people to get health coverage and care. The budget doubles down in both of these areas. It embraces the ACA repeal-and-replace bill sponsored by Senators Bill Cassidy, Lindsey Graham, Dean Heller, and Ron Johnson (the "Cassidy-Graham" proposal), then proposes to cut funding for coverage programs deeply below the levels in that bill. It also includes additional proposals designed to make it harder for low- and moderate-income people to enroll in Medicaid coverage and marketplace subsidies, even while these programs remain available in their current form. In total, the budget cuts Medicaid and ACA marketplace subsidies by $763 billion over ten years, with the cuts growing steeply over time.

The health policies in the President's fiscal year 2019 budget are a continuation of the Administration's health care agenda of the past year.

Outside of these areas, some of the health proposals in the budget have merit and deserve further consideration — for example, a number of its Medicare payment reforms. But even in the areas where the budget puts forward a more positive agenda, such as behavioral health and prescription drugs policy, aspects of its proposals raise concerns.

Affordable Care Act Repeal and Medicaid Overhaul

The budget embraces the Cassidy-Graham ACA repeal-and-replace bill, then proposes to cut coverage funding deeply below the levels in the bill.[2] Specifically:  

  • The budget would completely eliminate the ACA's Medicaid expansion, which has extended coverage to 12 million low-income adults, as well as its marketplace subsidies, which help more than 8 million people afford coverage. The budget wipes out these programs and demands that states come up with alternatives in less than two years. The result, according to the Congressional Budget Office (CBO), state insurance commissioners, and state Medicaid directors, would be massive disruption, given the scope of work, unrealistic timeline, and insufficient resources.[3]

  • The budget would replace the ACA's major coverage expansions with a vastly inadequate block grant. After an initial increase, block grant funding levels would ultimately fall far below current-law funding for coverage programs, since the block grant would grow only with general inflation, with no adjustment for population growth or health care costs. (These cuts would come on top of the large reductions in federal funding for coverage resulting from the December tax bill's repeal of the ACA's individual mandate, the requirement that most people have health insurance or pay a penalty.) Block grant funding also would not adjust from year to year for unexpected costs, leaving states entirely on the hook for any and all such costs from recessions, natural disasters, public health emergencies, or prescription drug price spikes, making it even harder for states to use these funds to even partially replace ACA coverage programs. In analyzing the Cassidy-Graham legislation, CBO concluded that its block grant would not enable states to establish coverage programs comparable to those in place under current law. Instead, states that did not expand Medicaid would use block grant funds in part to supplant state funding for existing programs, while Medicaid expansion states would struggle to maintain coverage for low-income adults and would generally not be able to replace the ACA subsidies that make marketplace coverage affordable for moderate-income 

  • The Cassidy-Graham bill the budget endorses also gives states broad authority to eliminate or weaken many of the ACA's protections for people with pre-existing conditions. Depending on how they used block grant dollars, states could permit insurers to charge higher premiums for people with pre-existing conditions or exclude key benefits from coverage for all individual market plans. As the CBO wrote in its preliminary analysis of the Cassidy-Graham plan, because the proposal would create such extreme disruption in insurance markets, states would face intense pressure to try to stabilize their markets by weakening these protections.

  • These proposals — in combination with other proposals in the budget (some discussed below) — would cut federal funding by a total of $763 billion over the ten-year period ending in 2028 (see Figure 1), compared to current-law funding for Medicaid expansion and subsidies, and by about $1.1 trillion relative to the baseline before the tax bill repealed the individual mandate.[5] The result would be millions losing coverage and worse or less affordable coverage for millions more. Experts concluded that the Cassidy-Graham proposal for Medicaid and the ACA used as the framework for the budget would — in combination with repeal of the individual mandate — likely lead to a total coverage loss of more than 20 million people, and the budget's proposed cuts to coverage are much deeper

  • Reference

  • Center on Budget and Policy Priorities

  • February 16, 2018

  • BY

  • Peggy Bailey, Matt Broaddus, Shelby Gonzales, Hannah Katch, and Paul Van de Water[1]

Alternative  Pain Management  For Lupus

Acupuncture pain relief

The majority of lupus patients are prescribed pain medication for lupus. But have you thought of alternatives that are less harmful to your body?  Well, I have.  You see I have been in constant pain for the pass 3 months, no I didn't take any prescribed medications for my pain but came so close to going to the ER. I knew that there had to be an alternative to manage my pain, after researching the topic of acupuncture came to the conclusion this was the right choice for me.

Acupuncture The Technique

The Chinese technique of acupuncture is one of the oldest most commonly used integrative procedures in the world.  Acupuncture is characterized by the placement of extremely thin needles into the body and reacts with the brain to release chemicals that reduce pain, regulate hormones, and influence many of the bodies systems.  A great deal of research has since and continues to  be done on acupuncture.  Current research in western medicine shows that acupuncture has an impact on many of the bodies functions, receptors, and systems.  Its demonstrated that it can be effective for a number of conditions.  Back and joint pain, circulation, digestive system regulation, depression, stress, and anxiety, hormone outputs, immune system balance, muscle tone, nervous system regulation. 

But what does research state about this treatment for Lupus Pain?

The National Institute of Health ran a study on the use of acupuncture treatment in lupus patients;  they found that 10 sessions of acupuncture was safe and very effective for patients with Systemic Lupus.  Acupuncture decreased pain and reduced fatigue in the subjects.  The objective of this study was to determine the feasibility of studying acupuncture in patients with systemic lupus erythematosus (SLE), and to pilot test the safety and explore benefits of a standardized acupuncture protocol designed to reduce pain and fatigue.  Twenty-four patients with SLE were randomly assigned to receive 10 sessions of either acupuncture, minimal needling or usual care.  Pain, fatigue and SLE disease activity were assessed at baseline and following the last sessions.  Safety was assessed at each session,.  Fifty-two patients were screened to enroll 24 eligible and interested persons.  Although transient side effects, such as brief needling pain and lightheadedness, were reported, no serious adverse events were associated with either the acupuncture or minimal needling procedures.  Twenty-two participants completed the study, and the majority (85%) of acupuncture and minimal needling participants were able to complete their sessions within the specified time period of 5-6 weeks.  40% of patients who received acupuncture or minimal needling had >30% improvement  on standard measures of pain, but no usual care patients showed improvement in pain. A ten -session course of acupuncture appears feasible and safe for patients with SLE.  Benefits were similar for

acupuncture and minimal needling.

References

 

Greco DM, Kao AH, Maksimowicz-McKinnon K, et al. Acupuncture  for systemic lupus erythematosus: a pilot RCT feasibility and safety study. Lupus> 2008;17(12):1108-16.

 

 

Experts call for urgent mental health support for autoimmune disease patients

 

More than half of patients with auto-immune conditions experience mental health conditions such as depression or anxiety, yet the majority are rarely or never asked in clinic about mental health symptoms, according to new research from the University of Cambridge and King's College London.

In a study published today in Rheumatology, researchers found that over half of the patients had rarely or never reported their mental health symptoms to a clinician, and that the range of possible mental health and neurological symptoms is much wider than has been previously reported.

The team surveyed neurological and psychiatric symptoms amongst 1,853 patients with systemic auto-immune rheumatic diseases (SARDs) such as lupus and rheumatoid arthritis. The researchers also surveyed 289 clinicians, mostly rheumatologists, psychiatrists and neurologists, and conducted 113 interviews with patients and clinicians.

The 30 symptoms that the team asked about included fatigue, hallucinations, anxiety and depression. Among the patients in the study, experience of most of these symptoms was very widespread.

55% of SARD patients were experiencing depression, 57% experiencing anxiety, 89% had experienced severe fatigue and 70% had experienced cognitive dysfunction, for example. The overall prevalence of symptoms was significantly higher than previously thought, and much higher than in a control group of healthy volunteers.

The mental health symptoms described by patients contrasted strongly with clinician estimates. For example, three times as many lupus patients reported experiencing suicidal thoughts compared to the estimate by clinicians (47% versus 15%). Clinicians were often surprised and concerned by the frequency and wide range of symptoms that patients reported to the researchers.

Some clinicians were much more focused on joint symptoms over mental health symptoms as they held the opinion that SARDs do not commonly affect the brain.

However, other clinicians felt that these symptoms were under-estimated because patients were rarely asked about them in clinic. One rheumatology nurse interviewed said: "Doctors don't go looking for it [hallucinations], so if we don't ask we don't think it exists much."

The study found disagreements between clinicians specialising in different aspects of care, but very few hospitals had effective systems where rheumatologists, neurologists and psychiatrists worked together.

Pollak stated the study highlights the importance of all clinicians asking their patients about mental health:

The study showed that patients were often reticent to report to clinicians mental health problems they might be having, sometimes feeling that they might be stigmatised. Patients frequently said that even when they did share their mental health symptoms with clinicians, they were often not commented on or not documented accurately or at all.

One patient expressed how this felt: "Feel guilty and useless as well as depressed and very unwell. I don't really feel supported, understood, listened to, hopeful at all. It is awful living like this…. All just feels hopeless."

Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge said: "The low level of reporting we identified is a major concern as problems with mental health, fatigue and cognition can be life-changing, and sometimes life-threatening. It's only by fully engaging patients in their healthcare and by asking them for their views that we will be able to determine the extent of these often hidden symptoms, and help patients get the understanding, support and treatment they need."

The research team suggests that though they found neurological and psychiatric symptoms to be under-elicited in clinic, under-identified in research and under-represented in clinical guidelines, they described almost all clinicians as highly motivated to improve care. Rapidly evolving knowledge – including the behavioural and cognitive impacts of chronic inflammation and a widening range of potential biomarkers – means that there is grounds for optimism.

Sarah Campbell, Chief Executive of the British Society for Rheumatology, commented: "This study highlights the urgent need for improvements in the access patients have to integrated mental health support. Given what the study finds on the prevalence of this issue and the deep impact neurological and psychiatric symptoms have on patients, it should be of grave concern to policy makers that only 8% of rheumatology departments in England and Wales have a psychologist embedded in their team. We fully support the study team's conclusion that more inter-disciplinary and patient-clinician collaboration is needed to ensure equity in the care of patients' mental and physical health."

The Rt Hon the Lord Blunkett said: "It's both surprising and deeply concerning that almost half of lupus patients have experienced suicidal thoughts, and that clinicians greatly under-estimate the mental health burden of these chronic diseases. This highlights the importance of extra funding for the NHS and the holistic care that is urgently needed for these patients. I echo the British Society of Rheumatologists' concerns about the poor current provision of mental health support. Now is the time for the Government to act to give them the support they desperately need."

Source:

University of Cambridge

Journal reference:

Sloan, M., et al. (2023) Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study. Rheumatology. doi.org/10.1093/rheumatology/kead369.

Scientists focus on understanding what underlies a difficult disease.

In an article published in Yale Medicine 2023 states.  

One of the most difficult things about lupus, a chronic autoimmune disease, is that people who have it don’t always realize it—they know something’s not right, but they’re not sure what. They may feel exhausted and have pain that is vague, nonspecific, and unpredictable. They may look healthy, so if they complain, friends and family—and even some doctors—might not take it too seriously.

Lupus is difficult to diagnose and treat because its symptoms mimic other conditions, it affects the immune system differently in people, and drugs traditionally used to treat it come with serious side effects. Still, doctors and scientists are determined to find solutions.

Why lupus is so difficult to diagnose

It’s important for doctors and patients to know the signs and symptoms of lupus, confusing as they are, since people who have SLE take an average of six years to get a diagnosis, and that’s enough time for lupus to start causing damage in the body, says Dr. Koumpouras.

One problem is that there is no single test for the disease. A diagnosis is primarily based on symptoms, although there are blood tests that are consistent with the diagnosis of lupus, Dr. Craft explains.

One test, called an antinuclear antibody test, looks for a type of antibody that often attacks the body’s own tissue, creating an autoimmune reaction. While a positive result could signal an increased risk for lupus, there are also many people who get a positive result who will never develop the disease, says Dr. Kang.

“So, the important questions are: Who should be tested? When should they be tested? And if the result is positive, who should be treated?” Dr. Kang says. “We hope additional studies will lead to answers.”

While most people with SLE do not have family members with the disease, there is a genetic predisposition to lupus, and the number of genetic factors a person has can be a predictor of their risk for the disease, Dr. Craft adds.

But while such conditions as sickle cell disease or cystic fibrosis can be identified based on the presence of a single genetic mutation, there are well over 100 genetic markers for lupus, and those include genes that are found in people who don’t have the disease. “For example, you and I may have changes in our genes that can also be found in a lupus patient, but we maybe only have five or 10 of those. But if you have more of those changes, you'll be at greater risk of developing the disease. And that's why it's very hard to screen for,” Dr. Craft says.

There also is believed to be a hormonal factor, since lupus is so much more common in women than in men—in fact, nine out of 10 young people who have it are female, Dr. Koumpouras says. Curiously, after menopause—when estrogen levels dip—many women with lupus feel better, he adds.

“There's also a random event, or environmental factor, that we're not quite clear on, that causes further activation of the immune response,” he says. 

Scientists are investigating all of this.

Yale Lupus Program: A ‘personalized medicine’ approach to lupus

Lupus manifests differently from patient to patient, which is one thing providers in the Yale Lupus Program have come to expect.  “Lupus is like snowflakes in that no two cases are alike,” Dr. Koumpouras says. 

The goal is to develop a personalized plan geared to lessen the impact of the disease on that patient’s life, he explains. “Then, I tend to see patients more frequently—maybe at four weeks instead of the typical three or four months after I first meet them,” he says. “We clinically measure how patients are doing with different scales and track their progress, aiming for a goal of remission or low disease activity.”

More lupus research is needed

The new drugs won’t help everyone with lupus, but Drs. Koumpouras and Craft believe there will be more treatments in the future.  

“In the last 10 years, we've started to understand a lot more about the pathogenesis [the development path] of the disease, and that's been the major advance,” says Dr. Craft. “That understanding has led to these new drugs, and it will lead to the development of others.”

This is an encouraging time for lupus patients, he adds. “The combined expertise at Yale continues to advance the understanding and clinical care of SLE, and is part of a global mission to accelerate the discovery of a cure.”

Reference

Yale Medicine

Lupus And Lymphoma

We know that SLE (Lupus) is a very complex illness, but did you know that individuals with SLE (Lupus) are more susceptible to lymphoma? We know that lupus mimics many other illnesses, but what is truly the connection between lupus and lymphoma?

What do we know about the connection between lupus and lymphoma? Well, we know more than we did 20 years ago, but the answer may still be “not enough,” according to an article by Boddu and colleagues published online in the March 2017 issue of “Case Reports in Rheumatology.”

When Lymphoma Develops in People With Lupus

Lymphoma is a cancer of the white blood cells, particularly the white blood cells known as lymphocytes. The two basic categories of lymphoma are Hodgkin lymphoma and non-Hodgkin lymphoma, or NHL. Lymphoma typically begins in the lymph nodes, but can also involve different organs, and it can arise within different tissues and structures of the body, not just the lymph nodes. As with lupus, the symptoms of lymphoma are varied and different people have differing lymphoma symptoms. Sometimes, the only symptom is a swollen lymph node:

  • Painless swelling of lymph nodes in your neck, armpits, or groin

  • Fatigue and fever

  • Drenching night sweats

  • Loss of appetite, unexplained weight loss—as much as 10% or more of your body weight

  • Itchy skin

  • Cough or chest pain, abdominal pain or fullness, rashes, and skin bumps

I truly believe that these two conditions can overlap, both illnesses involve the immune system. There have been several studies that show that individuals who have SLE (Lupus) have a higher incidence of lymphoma compared to the general population.  One of the many theories is that, in an immune system that lacks proper regulation (as in someone with SLE), the use of immunosuppressive therapy to treat lupus may cause the increased incidence of lymphoma in SLE.

Lupus and Non-Hodgkins Lymphoma

We know that SLE (Lupus) is a very complex illness, and it mimics so many other illnesses.  But do you realize that individuals with SLE (Lupus) are more susceptible to lymphoma?  To under stad the complexity of this illness, we must understand how lupus effects body and we must understand how NHL. 

The higher malignancy rate among people with systemic lupus is driven mainly by an increased risk of cancers of the white blood cells, particularly a threefold increased risk of lymphoma, says researcher Sasha R. Bernatsky, MD, assistant professor in the divisions of rheumatology and clinical epidemiology at McGill University in Montreal.

When Lymphoma Develops in People With Lupus

What do we know about the connection between lupus and lymphoma? Well, we know more than we did 20 years ago, but the answer may still be “not enough,” according to an article by Boddu and colleagues published online in the March 2017 issue of “Case Reports in Rheumatology.”  

Lymphoma, a Cancer of the White Blood Cells

Lymphoma is a cancer of the white blood cells, particularly the white blood cells known as lymphocytes. The two basic categories of lymphoma are Hodgkin lymphoma and non-Hodgkin lymphoma, or NHL.

Lymphoma typically begins in the lymph nodes, but can also involve different organs, and it can arise within different tissues and structures of the body, not just the lymph nodes. As with lupus, the symptoms of lymphoma are varied and different people have differing lymphoma symptoms. Sometimes, the only symptom is a swollen lymph node:

  • Painless swelling of lymph nodes in your neck, armpits, or groin

  • Fatigue and fever

  • Drenching night sweats

  • Loss of appetite, unexplained weight loss—as much as 10% or more of your body weight

  • Itchy skin

  • Cough or chest pain, abdominal pain or fullness, rashes, and skin bump

  • What These Two Conditions Have in Common

  • Well, sometimes the symptoms can overlap, for one. And both diseases involve the immune system: Lymphocytes are key cells in the immune system, and the immune system is what’s awry in SLE. Lymphocytes are also the problematic cells in lymphoma.

  • But there is also this: A number of studies have found that people with SLE have a higher incidence of lymphoma compared with the general public. One of the many theories is that, in an immune system that lacks proper regulation (as in someone with SLE), the use of immunosuppressive therapy to treat lupus may cause the increased incidence of lymphoma in SLE.

  • However, many studies have been done on this subject, with contradictory findings, and that doesn’t appear to be the whole story.

  • The researchers of the 2017 article in Case Reports in Rheumatology gleaned some trends from their review of the medical literature on people with SLE who develop lymphoma.

Effects of Stress on the Body: Everything You Need to Know

Close to 8.5 million Americans, nearly 3.5 percent of the adult population, report serious psychological distress. More than half, 55 percent, of the U.S. population say they are stressed during the day.  

Stress can be beneficial in some cases, helping you to perform or be productive, but prolonged or chronic stress can actually make you sick. Stress, especially long-term stress, can impact nearly all of the body’s systems, having significant physical and mental effects. 

Since most people are in some state of stress so much of the time, it can be difficult to recognize what stress actually is. It’s beneficial to know what stress looks like and exactly how it can impact the body, so you can learn how to manage it and better control your body’s stress response.

What Is Stress?

Stress is a response to physical, emotional, or mental tension or pressure. It is generally a reaction to a stimulus that activates the body’s fight-or-flight response. 

During this time, your body prepares itself for action. Generally, your heart rate will speed up, your attention becomes focused, your muscles tense up, your blood pressure goes up, your body temperature increases, and your breathing speeds up. 

Not all stress is bad. Some levels of stress are even considered beneficial. Stress can help you to focus and get things done as well as help to prevent accidents or injuries by alerting you to a potential danger. 

The body is equipped to handle stress in appropriate doses. It is when stress overwhelms the body or becomes chronic that issues can arise. 

Symptoms of Stress

Everyone handles and exhibits stress a little differently, so the symptoms can vary from person to person. Stress can impact every system in the body, from the ability to think clearly and emotions to behaviors and physical health. 

Emotional

Emotional symptoms of stress can include the following:

  • Easily frustrated

  • Agitation

  • Mood swings

  • Difficulty relaxing

  • Poor self-esteem

  • Feelings of depression, loneliness, and worthlessness

  • Loss of control or feeling the need to take control

  • Avoidance or isolation

  • Feelings of being overwhelmed

  • Anxiety

  • Irritability

Physical
Physical symptoms of stress can include the following:

  • Headaches

  • Insomnia or sleeping too much

  • Low energy levels

  • Muscle aches and tension

  • Stomach upset, which can include nausea, diarrhea, and constipation

  • Clenched or stiff jaw or neck

  • Teeth grinding

  • Loss of sexual desire 

  • Irregular heart rate

  • Chest pain

  • Cold, sweaty hands and feet

  • Ringing in the ears

  • Shaking or tremors

  • Frequent infections or illness

  • Dry mouth and difficulties swallowing

Cognitive

The cognitive symptoms of stress can include the following:

  • Nervousness

  • Worrying

  • Disorganization

  • Forgetfulness

  • Poor judgment

  • Difficulties focusing

  • Racing thoughts and inability to quiet the mind

  • Pessimism
    Behavioral

  • Behavioral symptoms of stress can include the following:

  • Substance abuse

  • Procrastination

  • Social isolation

  • Nervous behaviors like pacing, nail biting, or fidgeting

  • Avoiding responsibilities

  • Appetite changes
    Effects of Long-Term Stress

  • Stress is a common part of everyday life, and it generally resolves when the stressor is gone. If the stressor is not resolved and continues to influence the body’s stress response, the body will be unable to manage the stress levels, and it can remain in a constant state of stress. 

  • When stressed, the body produces the stress hormones cortisol and adrenaline. When the stressor is gone, the hypothalamus should tell the body to return to homeostasis. When this communication is dysfunctional, numerous health problems can arise, including metabolic disorders, chronic fatigue, immune disorders, and depression.

  • Chronic stress continues for weeks or months. It can have a wide range of negative effects on the brain and body, resulting in issues for both mental and physical health. 

  • Chronic stress can cause a multitude of health problems, including these:

  • Heart disease

  • Diabetes

  • Hypertension (high blood pressure)

  • Menstrual problems

  • Obesity

  • Depression

  • Anxiety

  • Sexual dysfunction

  • Skin problems, including acne or eczema

  • Gastrointestinal issues, such as an irritable colon, GERD, ulcerative colitis, and gastritis

  • Substance abuse and addiction

  • Long-term stress can also exacerbate existing or underlying physical or mental health issues. Chronic stress is a risk factor for suicidal ideations. 

  • Stress left unchecked can wreak havoc on every single system in the body, as the body becomes overwhelmed by the stress hormones. 

  • Stress Effects on the Respiratory System

  • When you are stressed, your breathing speeds up and you may feel short of breath. The airway between the nose and the lungs constricts. This can be an issue for anyone with breathing problems and pre-existing respiratory issues. Hyperventilation, or rapid breathing, caused by stress can induce a panic attack in those who are prone to panic attacks, for example. 

  • Stress-induced breathing issues can also trigger bigger issues in those with asthma, chronic bronchitis, COPD (chronic obstructive pulmonary disease), and emphysema. Acute stress can even potentially trigger an asthma attack.
    Reference
    Effects of Stress on the Body: Everything You Need to Know   bocarecoverycenter.com 

How Does Lupus Affect the Cardiovascular System

Lupus can affect the cardiovascular system, which includes your heart and blood vessels. In fact, cardiovascular disease, not lupus itself, is the number one cause of death in people with SLE. Therefore, it is very important that you take steps to maintain optimal cardiovascular health. Do not smoke, since smoking increases the risk of cardiovascular disease. A low-fat, low-cholesterol diet is also essential. Focus on eating whole grains, vegetables, and lean sources of protein. Limit your sodium (i.e., salt) intake, since sodium levels are directly linked to blood pressure. In addition, try to exercise at least 30 minutes per day. This goal can be difficult for people with lupus who experience reoccurring joint and muscle pain, fatigue, and other symptoms. However, engaging in low-impact daily activities such as walking, biking, yoga, Tai chi, and other forms of stretching may help to alleviate some of this pain while also helping you to maintain a healthy weight and strong cardiovascular system.

Hypertension (High Blood Pressure)

Fifty percent of people with lupus experience hypertension (high blood pressure), which is defined as a blood pressure of greater than 140/90 mmHg. In addition, many more lupus patients have blood pressures greater than the normal 120/80 mmHg limit. The most common causes of high blood pressure in people with lupus are obesity, kidney disease, and long-term steroid use. Other medications, such as cyclosporine (Neoral, Sandimmune, Gengraf) can also cause elevations in blood pressure.

High blood pressure can lead to kidney failure, stroke, heart failure, and heart attack. Since cardiovascular disease is the number one cause of death in people with lupus, it is very important that your blood pressure is brought to the healthy 120/80 mmHg level and kept there.

Reference

How Does Lupus Affect the Cardiovascular System : Johns Hopkins Lupus Center

NEWS

Media Buzz In Healthcare

Media Buzz

Study finds ‘startling’ levels of hidden mental health symptoms among people living with long term autoimmune diseases.

 

Peer-Reviewed Publication

UNIVERSITY OF CAMBRIDGE

More than half of patients with auto-immune conditions experience mental health conditions such as depression or anxiety, yet the majority are rarely or never asked in clinic about mental health symptoms, according to new research from the University of Cambridge and King’s College London.

In a study published today in Rheumatology, researchers found that over half of the patients had rarely or never reported their mental health symptoms to a clinician, and that the range of possible mental health and neurological symptoms is much wider than has been previously reported.

The team surveyed neurological and psychiatric symptoms amongst 1,853 patients with systemic auto-immune rheumatic diseases (SARDs) such as lupus and rheumatoid arthritis. The researchers also surveyed 289 clinicians, mostly rheumatologists, psychiatrists and neurologists, and conducted 113 interviews with patients and clinicians.

The 30 symptoms that the team asked about included fatigue, hallucinations, anxiety and depression. Among the patients in the study, experience of most of these symptoms was very widespread.

55% of SARD patients were experiencing depression, 57% experiencing anxiety, 89% had experienced severe fatigue and 70% had experienced cognitive dysfunction, for example. The overall prevalence of symptoms was significantly higher than previously thought, and much higher than in a control group of healthy volunteers.

The mental health symptoms described by patients contrasted strongly with clinician estimates. For example, three times as many lupus patients reported experiencing suicidal thoughts compared to the estimate by clinicians (47% versus 15%). Clinicians were often surprised and concerned by the frequency and wide range of symptoms that patients reported to the researchers.

Some clinicians were much more focused on joint symptoms over mental health symptoms as they held the opinion that SARDs do not commonly affect the brain.

However, other clinicians felt that these symptoms were under-estimated because patients were rarely asked about them in clinic. One rheumatology nurse interviewed said: “Doctors don’t go looking for it [hallucinations], so if we don’t ask we don’t think it exists much.”

The study found disagreements between clinicians specialising in different aspects of care, but very few hospitals had effective systems where rheumatologists, neurologists and psychiatrists worked together.

Dr Tom Pollak from the Institute of Psychiatry, Psychology & Neuroscience at King’s College London, said the study highlights the importance of all clinicians asking their patients about mental health: “We have known for some time that having a systemic autoimmune disease can negatively affect one’s mental health, but this study paints a startling picture of the breadth and impact of these symptoms. Everyone working in healthcare with these patients should routinely ask about mental wellbeing, and patients should be supported to speak up without fear of judgement. No patient should suffer in silence.”

The study showed that patients were often reticent to report to clinicians mental health problems they might be having, sometimes feeling that they might be stigmatised. Patients frequently said that even when they did share their mental health symptoms with clinicians, they were often not commented on or not documented accurately or at all.

One patient expressed how this felt: “Feel guilty and useless as well as depressed and very unwell. I don’t really feel supported, understood, listened to, hopeful at all. It is awful living like this…. All just feels hopeless.”

Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge said: “The low level of reporting we identified is a major concern as problems with mental health, fatigue and cognition can be life-changing, and sometimes life-threatening. It’s only by fully engaging patients in their healthcare and by asking them for their views that we will be able to determine the extent of these often hidden symptoms, and help patients get the understanding, support and treatment they need.”

The research team suggests that though they found neurological and psychiatric symptoms to be under-elicited in clinic, under-identified in research and under-represented in clinical guidelines, they described almost all clinicians as highly motivated to improve care. Rapidly evolving knowledge – including the behavioural and cognitive impacts of chronic inflammation and a widening range of potential biomarkers – means that there is grounds for optimism.

Sarah Campbell, Chief Executive of the British Society for Rheumatology, commented: "This study highlights the urgent need for improvements in the access patients have to integrated mental health support. Given what the study finds on the prevalence of this issue and the deep impact neurological and psychiatric symptoms have on patients, it should be of grave concern to policy makers that only 8% of rheumatology departments in England and Wales have a psychologist embedded in their team. We fully support the study team’s conclusion that more inter-disciplinary and patient-clinician collaboration is needed to ensure equity in the care of patients’ mental and physical health."

The Rt Hon the Lord Blunkett said: "It’s both surprising and deeply concerning that almost half of lupus patients have experienced suicidal thoughts, and that clinician greatly under-estimate the mental health burden of these chronic diseases. This highlights the importance of extra funding for the NHS and the holistic care that is urgently needed for these patients. I echo the British Society of Rheumatologists’ concerns about the poor current provision of mental health support. Now is the time for the Government to act to give them the support they desperately need."

The research was funded by The Lupus Trust and LUPUS UK

Reference

Sloan, M et al. Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study. Rheumatology; 26 Jul 2023; DOI: 10.1093/rhe/kead369

Grow Your Knowledge 

You are your own best advocate. 

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Potential new therapeutic target for inflammatory diseases such as lupus and sepsis

Media Buzz

Understanding Health Literacy
 

Health literacy is important for everyone because, at some point in our lives, we all need to be able to find, understand, and use health information and services.

Taking care of our health is part of everyday life, not just when we visit a doctor, clinic, or hospital. Health literacy can help us prevent health problems, protect our health, and better manage health problems when they arise.  

Even people who read well and are comfortable using numbers can face health literacy issues when

  • They aren’t familiar with medical terms or how their bodies work.

  • They have to interpret statistics and evaluate risks and benefits that affect their health and safety.

  • They are diagnosed with a serious illness and are scared and confused.

  • They have health conditions that require complicated self-care.

  • They are voting on an issue affecting the community’s health and relying on unfamiliar technical information.

  • Become knowledgeable and understand health literacy.  By becoming more knowledgeable you not only help yourself, but you also help and become partners with your healthcare provider.

Reference

Understanding Health Literacy | Health Literacy | CDC

Health Literacy Affects Everyone

Scientists working in the School of Biochemistry and Immunology in the Trinity Biomedical Sciences Institute at Trinity College Dublin have made an important breakthrough in understanding what goes wrong in our bodies during the progression of inflammatory diseases and -- in doing so -- unearthed a potential new therapeutic target.

The scientists have found that an enzyme called Fumarate Hydratase is repressed in macrophages, a frontline inflammatory cell type implicated in a range of diseases including Lupus, Arthritis, Sepsis and COVID-19.

Professor Luke O'Neill, Professor of Biochemistry at Trinity is the lead author of the research article that has just been published in leading international journal, Nature. He said:

"No-one has made a link from Fumarate Hydratase to inflammatory macrophages before and we feel that this process might be targetable to treat debilitating diseases like Lupus, which is a nasty autoimmune disease that damages several parts of the body including the skin, kidneys and joints."

Joint first-author Christian Peace added:

"We have made an important link between Fumarate Hydratase and immune proteins called cytokines that mediate inflammatory diseases. We found that when Fumarate Hydratase is repressed, RNA is released from mitochondria which can bind to key proteins 'MDA5' and 'TLR7' and trigger the release of cytokines, thereby worsening inflammation. This process could potentially be targeted therapeutically."

Fumarate Hydratase was shown to be repressed in a model of sepsis, an often-fatal systemic inflammatory condition that can happen during bacterial and viral infections. Similarly, in blood samples from patients with Lupus, Fumarate Hydratase was dramatically decreased.  

https://www.sciencedaily.com/releases/2023/03/230308112118.htm#:~:text=%22Restoring%20Fumarate%20Hydratase,for%20EU%20science.

Reference

Trinity College Dublin. "Potential new therapeutic target for inflammatory diseases such as lupus and sepsis." ScienceDaily. ScienceDaily, 8 March 2023. <www.sciencedaily.com/releases/2023/03/230308112118.htm>.

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How to Deal with Anxiety

Treatments for anxiety include prescription drugs, counseling, meditation and exercise. Experts recommend a combination of these modalities. Experiencing some anxiety when facing difficult decisions or life changes is normal, but when that anxiety interferes with daily life it becomes a disorder.  

About 40 million American adults have an anxiety disorder, according to the National Alliance on Mental Illness. This makes anxiety disorders the most common mental illness in America.

Anxiety disorders are characterized by feelings of anxiety that go beyond worrying about everyday things like problems at work or school or dealing with life changes. People with anxiety disorders may have constant, uncontrollable fear that interferes with their lives.

COPING WITH ANXIETY DURING COVID-19

The stress of a crisis can take a toll on your mental health. Finding ways to cope with your fear and anxiety will help you and the people you care about stay strong during the coronavirus outbreak.Anxiety may also lead to other health problems or habits that may worsen health. For example, people with anxiety may suffer from insomnia, chronic pain or digestive problems. Smoking and vaping is also a problem for people with anxiety, and both of these habits lead to health problems.

People with anxiety and other mental disorders smoke at two to four times the rate of the general population, according to the National Institute on Drug Abuse. They are also twice as likely to have tried e-cigarettes, according to a 2014 study led by Sharon Cummins of University of California, San Diego School of Medicine.

“In my practice, I would say probably 40-ish percent of folks actually have an anxiety issue or disorder,” said licensed mental health counselor and psychotherapist Stacy O’Mara. “Usually for [these patients], that means they are missing sleep.” Treatment is recommended “when they’re at risk of maybe losing a job, losing a partner,” she said.

Anxiety manifests itself in many ways, from general anxiety disorder to social anxiety disorder. The condition is highly treatable, but less than 40 percent of people who experience anxiety receive treatment, according to the Anxiety and Depression Association of America.

Reference

How To Deal with Anxiety (2023) Retrieved from: How to Deal with Anxiety | Tips to Manage Stress and Reduce Anxiety (drugwatch.com)

General Resources

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General Autoimmune  Disease Information Resources

American Autoimmune Related Disease Association

National Office

22100 Gratiot Ave. E.

Eastpointe, MI 48201

(586) 776-3900

website: https://aarda.org/

 Information about more than fifty different autoimmune disorders.

National Institutes of Health

Bethesda, MD 20892-2350

http://www.niad.nih.gov/publications/autoimmune/autoimmune.htm

Autoimmune Conditions Support Forum

http://www.delphiforums.com/autoimmunehelp

An online support group featuring information exchange, support, and online community.

Lupus/Systemic Lupus Erythematosus

Patient Support Organizations

Lupus Foundation of America, Inc.

2121 K Street NW, Suite 200

Washington, DC 20037

(202) 249-1155

Email: info@lupus.org

http://www.lupus.org/

Medical Organization

 

American College of Rheumatologists

2200 Lake Blvd, 

Atlanta, GA 30319

(404) 633-3777

http://www.rheumatology.org/

Protect yourself from the damage of chronic inflammation.

Science has proven that chronic, low-grade inflammation can turn into a silent killer that contributes to cardiovas­cular disease, cancer, type 2 diabetes and other conditions.

Reference

Harvard Medical School

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