Lupus

Wednesday, May 30, 2012

Please sign this petition for lupus

http://www.change.org/petitions/the-lupus-foundation-of-america-stop-publishing-most-people-with-lupus-are-able-to-continue-to-work?utm_medium=facebook&utm_source=share_petition&utm_term=autopublish

For more info go to my Mrs.lupus facebook page https://www.facebook.com/Mrs.lupus

The LFA (Lupus Foundation of America) is wonderful in many ways, however, today they published a "lupus fact" that stated that most people with lupus are able to work.  I understand that the LFA likes to be positive about the outlook and prognosis for those that suffer with lupus, but I am wondering where they got this "most" statistic from.  The latest study by Reuters Health study states  "Lupus patients had higher levels of anxiety and lower quality of life compared to controls and MS patients, and depression status was worse in lupus and MS patients than in controls. None of these features, however, coincided with the presence of headache." http://www.reuters.com/article/2011/08/30/us-migranes-lupus-idUSTRE77T51K20110830

I as well as many others find normal life hard and working to be impossible, I just want us to be included and recognized and I don't want others to have trouble with getting disability, due to the statements given by the LFA about working. 

SURVEY SHOWS THE BURDEN OF LUPUS ON WORK AND WALLET
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Patients, caregivers face significant financial and professional challenges
ROCKVILLE, Maryland, and RESEARCH TRIANGLE PARK, NC – July 11, 2012 – Results of a Roper survey of the lupus community highlight that in addition to the physical burdens of lupus, the disease can contribute to significant economic challenges among patients and caregivers. Patients with systemic lupus erythematosus (SLE or lupus), caregivers and physicians overwhelmingly agree that career disruptions caused by the challenges of living with lupus often exact a heavy financial and emotional toll, according to the survey.
A majority of patients, supporters and doctors report that people with lupus change career plans because of lupus, which is a chronic and potentially disabling disease. More than half (63 percent) of respondents with lupus quit working or retired earlier than planned, about two-thirds (67 percent) reduced the number hours worked, and 51 percent of patients changed to a less strenuous job.
Lupus can occur at any age, but appears mostly in young people aged 15 to 44 – prime working years. Inability to work seems to weigh heavily on patients, emotionally and financially. For example, 82 percent of patients reported that not working makes them feel they are not contributing their fair share to the household, and 83 percent found it devastating to leave their jobs due to lupus.
Many people with lupus say the disease impacts their productivity and has an undesirable effect on their relationships with co-workers. In fact:
  • 72 percent of patients admit they are not as productive as they could be at work as a direct result of lupus. 
  • Approximately 80 percent of lupus patients say that their condition has caused them to take more sick days. 
  • 59 percent of lupus patients surveyed say that other people think that lupus affects their reliability and dependability. 
  • About two-thirds (69 percent) of patients say they only tell a few co-workers about having lupus.
“It is important to reinvent yourself in meaningful ways when a chronic illness limits your original life plans,” said Joan Merrill, M.D., chair of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation, and consultant to Human Genome Sciences and GlaxoSmithKline. “However, this is hard to do. Friends and family can help by valuing and supporting a new direction or modified goals.”
Some people living with lupus have had to think differently about their jobs or careers because they found it difficult to fulfill their responsibilities, due to lupus. As disappointing as this may be, many people living with lupus have been able to find jobs in different or related fields that are more suitable to their situations. There are resources and tips to help you better manage your career, available at UsinLupus.com.

About the National Burden of Lupus Survey

The national survey was conducted by Gfk Roper Public Affairs and Communications (GfK Roper North America or Roper) from July through September 2011. It was designed to evaluate the daily and long-term impact of lupus on health, family relationships, career and quality of life, and identify potential gaps in communication. Results were drawn from more than 950 people in the lupus community— 502 people who reported being diagnosed with SLE, 204 supporters (family members or friends) of people with lupus and 251 rheumatologists (physicians who specialize in treating lupus). The survey was funded and developed by Human Genome Sciences and GlaxoSmithKline.
This release is the second in a series of reports on the National Burden of Disease Survey. For previous releases please visit: New Survey Reveals Lupus Communication Gap as Many Patients Remain Silent on True Impact of the Disease.

Resources

People with lupus and those who care for them can visit www.usinlupus.com for online support, information and inspiration. For additional information on lupus, visit the Lupus Foundation of America at www.lupus.org, the Lupus Research Institute at www.lupusresearchinstitute.org, the Alliance for Lupus Research at www.lupusresearch.org and the National Institute of Arthritis and Musculoskeletal and Skin Diseases at www.niams.nih.gov. Except for usinlupus.com, the websites listed are external to Human Genome Sciences and GlaxoSmithKline. Human Genome Sciences and GlaxoSmithKline do not have control over the content of the information provided on these websites and therefore do not warrant their accuracy or completeness.
###
For more information about Human Genome Sciences, please visit the company’s website at www.hgsi.com.
For more information on GlaxoSmithKline, please visit www.gsk.com.

About GfK Roper Public Affairs & Corporate Communications

GfK Roper Public Affairs & Corporate Communications is a division of GfK Custom Research North America. The group specializes in customized public affairs and public opinion polling, media and corporate communications research, and corporate reputation measurement in the United States and globally. In addition to delivering a broad range of customized research studies, GfK Roper Public Affairs & Corporate Communications draws from GfK’s syndicated consumer tracking services, GfK Roper Reports® US and GfK Roper Reports® Worldwide, which monitor consumer values, beliefs, attitudes and behaviors in the United States and more than 25 other countries. The division also serves as the official polling partner of the Associated Press conducting the AP-GfK Poll (www.ap-gfkpoll.com).
Inquiries:
Diana Torres
(212) 819-4895
Diana.Torres@edelman.com

 
  1. National Burden of Disease Survey, slide 58, patients statistic “Quit working or retired earlier than planned due to lupus”
  2. National Burden of Disease Survey, slide 58, patient statistic “Reduced the number of hours worked due to lupus”
  3. National Burden of Disease Survey, slide 58, patient statistic “Changed to a less strenuous job due to lupus”
  4. NIH. National Institute of Arthritis and Musculoskeletal and Skin Diseases. Lupus. April 2009. http://www.niams.nih.gov/Health_Info/Lupus/do_i_have_lupus.asp. (“Who get’s lupus?” sub section) Accessed December 1, 2011.
  5. National Burden of Disease Survey, slide 61, (50 percent strongly agree/32 percent somewhat agree), patient statistic “Not working makes me feel that I am not contributing a fair share to the household”
  6. National Burden of Disease Survey, slide 61, (58 percent strongly agree/25 percent somewhat agree), patient statistic “Having to leave my job due to my lupus was devastating to me”
  7. National Burden of Disease Survey, slide 60, patient statistic “Because of lupus, I’m not as productive as I could be at work”
  8. National Burden of Disease Survey, slide 60, patient statistic, “Lupus caused me to take more sick days than I would take if I were not affected by lupus”
  9. National Burden of Disease Survey, slide 51, (26 percent strongly agree/33 percent somewhat agree), patient statistic “People think that lupus affects my reliability and dependability”
  10. National Burden of Disease Survey, slide 60, patient statistic, “I told only a few co-workers about having lupus”
  11. The Us in Lupus. “Together we’re empowered.” http://www.usinlupus.com/lupus-support-group/lupus-and-stress/lupus-facts.html (“Relate well” section)
  12. The Us in Lupus. “Together we’re empowered: Your best work.” http://www.usinlupus.com/lupus-support-group/lupus-and-stress/lupus-facts.html (Para 3)
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Tuesday, May 15, 2012

Lupus Statistics

I am always very interested in all the statistics I can find about lupus.  One of the most interesting stats I have read is that 1 in 185 people in the U.S. have lupus.   It is definitely not a rare disease, it is a common illness. I was surprised that there were not many up to date statistics on mortality in lupus patients, with lupus being the cause of death. If not due to direct organ damage, like kidney lupus (lupus nephritis), lupus is not usually given as the cause of death.  For example, if someone with SLE dies of cardiac arrest, that may be the only given cause of death, not cardiac arrest due to lupus.  Better data and records need to be kept to get a true statistical analysis of lupus death rates.  Sorry, I know that this subject can be depressing, however knowledge is power, and we must arm ourselves with as much information as possible.

http://www.arthritis-pain-cure.com/lupus_graphs.html

Informational Lupus Charts and Statistics
Lupus statistics provide a better understanding of the magnitude of lupus and the importance of raising awareness of the fact that lupus is a serious illness. These lupus facts help raise awareness so that the general population can gain a more widespread acceptance and understanding for lupus and other “invisible disabilities.
These lupus statistics are not intended to be grim or frightening. They are simply fact and figures, statistics about lupus. The purpose of these lupus statistics is to put the seriousness and magnitude of lupus into perspective.
Lupus Statistics, General:
  • More people have lupus than cerebral palsy, cystic fibrosis and multiple sclerosis combined.
  • Women are nine times more likely to develop lupus than men.
  • The average age of the lupus patient is between 15 and 45 years old.
Lupus Statistics, Prevalence:
  • About 1,500,000 Americans have a form of lupus.
  • More than 16,000 Americans develop lupus each year.
  • Systemic lupus erythematosus occurs in 1 out of every 600 Caucasian women, 1 out of every 450 Latin women and 1 out of every 200 African-American women.
  • African American women rank first with lupus cases, followed by American Indian women second, Hispanic women third and Caucasian women fourth.
  • Lupus is two to three times more common among African Americans, Hispanics, Asians, and Native Americans.
Lupus Statistics, Types of Lupus:
  • About 65 percent of systemic lupus erythematosus patients will have skin involvement, including malar rashes and discoid lesions.
  • About 10% of cutaneous lupus patients will develop systemic lupus erythematosus.
  • About 30% of systemic lupus erythematosus patients will develop lupus nephritis.
  • About 30% of systemic lupus erythematosus patients will develop heart and/or lung problems.
  • Only 20% of lupus patients test positive for RF (rheumatoid factor).
Lupus Statistics, Comorbid:
  • About 50 percent of systemic lupus erythematosus patients will have a neuropsychiatric disorder such as seizures, memory loss, headaches, or depression.
  • Women with systemic lupus erythematosus have an increased risk of developing heart disease.
  • Between 40 and 60 percent of systemic lupus erythematosus patients have some form of photosensitivity.
  • About10% of people with lupus will have symptoms of one or more other connective tissue diseases.
Lupus Statistics, Mortality:
  • Only 50% of lupus patients lived 4 years after diagnosis in the 1950s. Currently between 80 and 90 percent of lupus patients survivor 10 years after diagnosis.
  • Lupus deaths have increased 61 percent since 1980.
  • Lupus deaths among African-American women have increased 70% since 1980.
  • About 15 percent of arthritis deaths are from systemic lupus erythematosus.
  • Almost 37 percent of systemic lupus erythematosus deaths are among people between 15 and 44.
  • Lupus deaths are five times higher for women than men.
  • Lupus deaths are three times higher for blacks than for whites.
Lupus Statistics, Misc.:
  • About 5 percent of the children born to individuals with lupus will develop the illness.
  • 50 percent of lupus patients see at least 3 doctors before being diagnosed.
Again, these lupus fact statistics are not intended to be grim or frightening. Lupus facts provide a better understanding of the magnitude of lupus and the importance of raising awareness of this serious illness.


 Economic ImpactEconomic Impact 
  • A study reported in October 2008 found that the average annual direct health care cost of patients with lupus was $12,643.  The study's authors also determined that the mean annual productivity costs (lost hours of productive work) for participants of employment age (between the ages of 18 and 65) was $8,659. Thus, the mean annual total costs (combining direct costs and productivity costs for subjects of employment age) was $20,924.
  • According to a Lupus Foundation of America membership survey, one in four patients receive their health care through a government-sponsored program, such as Medicare or Medicaid.
  • Two of three lupus patients reported a complete or partial loss of their income because they no longer are unable to work fulltime due to complications of lupus.
  • One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.
  • Awareness
  • While lupus is a widespread disease, awareness of the disease lags behind many other illnesses.
  • In a nationwide poll of 1,000 adults conducted for the LFA, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus.
  • In an another survey, only four of ten young adults ages 18-24 claimed to be aware of lupus, even though the disease often strikes during the childbearing years.
  • While 65% of respondents to this survey claimed awareness of lupus, only 20% could correctly answer basic questions about the disease.
Diagnosis and Treatment
  • A LFA survey of its members suggests that more than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.
  • Nearly half of the survey participants (49%) received their diagnosis of lupus after being examined by a rheumatologist, a medical specialist who treats diseases of the connective tissue.
  • Four of ten lupus patients are treated by three or more doctors, and take six or more medications to treat symptoms of the disease.
Other Autoimmune Diseases
  • One of three patients responding to the LFA membership survey reported they had another autoimmune disease in addition to lupus, and almost half had a relative with lupus.
  • Autoimmune diseases like lupus often run in families.
Coping
  • Most lupus patients reported that they are coping well with lupus (78%), and that other family members are understanding and supportive (72%).
  • People with lupus named other family members (84%) and friends (72%) as their primary support network.
  • The survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus.
Back to LFA Newsroom homepage

http://www.lupusmctd.com/index.php?topic=1915.0;wap2 
Below is statistic charts and information to help you see how the death rate has changed over the years, but till there is a cure, we can never give up hope for our loved ones and for ourselves  prplbtfy 

Trends in Deaths from Systemic Lupus Erythematosus --- United States, 1979--1998
Systemic lupus erythematosus (SLE) is a serious autoimmune disease of unknown etiology that can affect several organs. Because SLE affects connective tissues and because painful joints and arthritis are among its most common manifestations, this disease is classified with arthritis and other rheumatic diseases (1). SLE is one of the more fatal forms of rheumatic diseases and non-Causcasian race is a risk factor for death from SLE; however, trends in death from SLE have not been analyzed recently. To characterize deaths from SLE, CDC reviewed SLE deaths during 1979--1998. This report presents the results of that analysis, which indicate that marked age-, sex-, and race-specific disparities exist in SLE death rates and that death rates have increased by approximately 70% during the study period among black women aged 45--64 years. Prevention of deaths requires early recognition and diagnosis of SLE and appropriate therapeutic management.

The analysis used National Center for Health Statistics Multiple Cause-of-Death Public Use Data Tapes for 1979--1998. These national mortality statistics were based on data from death certificates filed in state vital statistics offices. Demographic data (e.g., age and race/ethnicity) listed on death certificates were reported by funeral directors, usually from information provided by the decedent's family. Causes of death listed on death certificates were reported by a physician, medical examiner, or coroner by using a format specified by the World Health Organization and endorsed by CDC. An SLE death was defined as any death of a U.S. resident coded with an underlying cause of death of systemic lupus erythematosus (International Classification of Diseases, Ninth Revision, code 710.0). Death rates were calculated by using annual deaths and corresponding U.S. residential population estimates (2). Death rates were calculated for whites and blacks. Rates for other races were not calculated because numbers were too small for meaningful analysis.

During 1979--1998, the annual number of deaths increased from 879 to 1,406, and the crude death rate increased from 39 to 52 per 10 million population, with 22,861 deaths reported during the study period (Table 1). Of all SLE deaths, 36.4% occurred among persons aged 15--44 years. For each year, crude death rates increased with age, were >5 times higher among women than men, and were >3 times higher among blacks than whites. Among black women, death rates were highest and increased most (69.7%) among those aged 45--64 years, with little difference in rates among other age groups (Figure 1).

Reported by: JJ Sacks, MD, CG Helmick, MD, G Langmaid, JE Sniezek, MD, Div of Adult and Community Health, National Center for Chronic Disease Prevention and Health Promotion, CDC.

Editorial Note:
The findings in this report document marked age-, sex-, and race-specific disparities in SLE deaths. Although SLE mortality is most frequently caused by active SLE or by associated organ failure, infection, or cardiovascular disease from accelerated atherosclerosis (3), some studies suggest that renal disease might account for excess SLE deaths among blacks (4). Differential ascertainment and reporting of SLE deaths by race is possible, but probably does not account for the magnitude of observed differences, especially among different age groups for white and black women.

A higher incidence of SLE among black women might account for the racial differences in death rates. However, no ongoing population-based studies exist that determine how changes in SLE incidence contributed to the increase in the death rate. Beyond a change in incidence, other remediable reasons for an increase in SLE mortality among black women include later diagnosis, problems in access to care, less effective treatments, and poorer compliance with therapeutic regimens (5).

The findings in this report are subject to at least four limitations. First, death rates might be underestimated. Because multiple cause-of-death data were used in this analysis, other causes of death (e.g., kidney disease and heart disease) might have been listed as the underlying cause of death rather than SLE. An additional 17,450 persons who died during 1979--1998 had SLE listed as an associated cause of death on their death certificates. Second, SLE can be difficult to diagnose clinically, and both underdiagnosis and overdiagnosis (e.g., because of positive antinuclear antibody tests) occur (6). However, physicians reporting SLE as the underlying cause of death presumably had sufficient data supporting the diagnosis to cite SLE first instead of other causes. Third, rates for racial/ethnic populations other than white and black were not calculated because numbers were too small for meaningful analysis. These populations might have high rates of SLE (7). Finally, because prevalence estimates for SLE are variable, population death rates were calculated rather than case fatality rates.

Arthritis and other rheumatic conditions are highly prevalent, disabling, and costly (8). SLE accounts for 14.5% of all deaths from arthritis (CDC, unpublished data, 1997) and represents one of these conditions that has premature mortality; approximately one third of deaths from SLE occur among persons aged <45 years. Of all deaths from arthritis, SLE accounts for 44.0% of deaths among persons aged <45 years (CDC, unpublished data, 1997).

Because of SLE's protean manifestations, preventing excess and premature deaths will require clinical suspicion of the diagnosis, early recognition, appropriate therapeutic management, compliance with treatment, and improved treatment of long-term consequences (e.g., renal disease or accelerated atherosclerosis) (9). One of the public health strategies outlined in The National Arthritis Action Plan (8) is to better define issues related to rheumatic conditions such as SLE. Because further research into the causes of the marked age-, sex-, and race-specific disparities in death rates and temporal changes in death rates is necessary, CDC plans to develop a large population-based registry of SLE to monitor trends in SLE incidence and prevalence and better characterize persons with this disease. Studies conducted from this registry will examine why disparities and death rates exist and how mortality from SLE can be reduced
.


 Mortality Rates in SLE (Systemic lupus erythematosus)

http://www.arthritis.org/mortality-sle.php
Published in Arthritis and Rheumatism, Volume 54, Issue 8
July 2006

What problem was studied?
Systemic lupus erythematosus (SLE, also known as lupus) is a multisystem, autoimmune disorder that can be severe and life threatening. It has long been suspected that people with SLE have an increased mortality rate compared with people who do not have SLE. This suspicion has been shown to be true in several small studies. Recently, a large team of researchers, including Arthritis Foundation-funded researcher Rosalind Ramsey-Goldman, MD, DrPH, of Northwestern University in Chicago, have assembled data from the largest group of people with SLE ever studied and analyzed mortality rates.

What was done in the study?
Researchers from 23 lupus centers in 7 countries compiled information regarding 9,547 people with SLE. Data were collected on each patient’s date of birth, sex, date of SLE diagnosis, date of entry into the study, date of death, if applicable, and cause of death. The number of observed deaths was then compared with the number of expected deaths according to general population mortality rates. The ratio of observed to expected deaths is called the standardized mortality ratio (SMR).

What were the study results?
Of the total study group, 1,255 deaths occurred during the observation period. The overall SMR for people with SLE was 2.4, meaning that a person with lupus was 2.4 times more likely to die of any cause than a demographically matched person without lupus. Demographically matched means that the comparator group was of the same geography, age, sex and time in history as the person being studied.

Lupus was the official cause of death in 291 cases; however, the most common cause of death was circulatory disease (with an SMR of 1.7), including all types of heart disease, arterial disease and strokes. People with lupus were less likely to die of cancer than the general population except for two circumstances: non-Hodgkin’s lymphoma had an SMR of 2.8 and lung cancer had an SMR of 2.3. Although the total number of people who died of nephritis (kidney disease) and infections other than pneumonia were small, these conditions as causes of death in SLE were higher than the comparator groups, with SMRs of 7.9 and 5.0, respectively.

Patients who were female, younger than 25 years or had a disease duration of less than one year all had particularly high SMRs. Thus, early in the disease course, the risk of death is particularly high and is usually related to the disease itself or treatment for the disease. It also was found that in the United States (the only participating country with ethnic/race data available), African-Americans had a higher SMR than Caucasians (2.6 versus 1.4).

What is the relevance to people with lupus?
Although the death rate among people with lupus has drastically declined in the past decade because of better and early treatment, this study demonstrates a high incidence of death in young women early in their disease course and a high incidence of death due to circulatory disease. People with SLE should use this information to work closely with their doctors to mitigate these risks through close monitoring for worsening disease activity and treatment complications.

In addition, people with SLE should be careful to avoid unnecessary dangers that can lead to circulatory disease, such as smoking, high-fat or high-calorie diets, lack of exercise or being obese.

Bernatsky S, Bovin J-F, Joseph L, et al. Mortality in systemic lupus erythematosus. Arthritis Rheum 2006;54:2550--7.




Death Rates Still High in Lupus Nephritis






Long-term mortality remains high among patients with lupus nephritis despite improvements in overall care for systemic lupus erythematosus (SLE), a Danish cohort study showed.

Compared with the general Danish population, the standardized mortality ratio among a cohort of 100 patients with lupus nephritis was 6.8 (95% CI 4.9 to 9.4), according to Mikkel Faurschou, MD, of Copenhagen University Hospital, and colleagues.


Mortality was even higher among patients who were younger than 30 at the time of their first renal biopsy (SMR 10.9, 95% CI 5.6 to 21), the researchers reported in the June
Arthritis Care & Research.
Nephritis has been reported to afflict 27% to 45% of patients with SLE, and although aggressive immunotherapy has brightened the prognosis for patients with this systemic autoimmune disease, many still progress to end-stage renal disease.
Data on long-term outcomes in lupus nephritis remain sparse, however. So Faurschou and colleagues examined mortality and end-stage renal disease in a cohort of 100 patients diagnosed between 1971 and 1995 and followed for a median duration of 14.7 years.
Almost all of the patients were white and more than two-thirds were women. Median age at the time of their SLE diagnosis was 28 years; median age at the time of their first renal biopsy was 30 years.
Most patients had WHO class III or IV nephritis, and treatments used for induction of remission included cyclophosphamide, azathioprine, and corticosteroids.
A total of 37 patients died during the follow-up period.
Cardiovascular and cerebrovascular events were the cause of death in 46% of deaths occurring within five years of the first renal biopsy and in 42% of deaths in the years afterwards.
Infections accounted for 23% of deaths prior to five years and for 8% of deaths thereafter. Active SLE accounted for 31% of deaths before five years and for 12% of deaths occurring later.
While the highest mortality was seen in younger patients, those who were 30 or older at the time of renal biopsy also were at risk (SMR 6, 95% CI 4.2 to 8.8).
Mortality also was higher for patients diagnosed during the 1970s (SMR 9, 95% CI 4.7 to 17.1) compared with the 1990s (SMR 6.6, 95% CI 3.1 to 13.8). The authors speculate that rather than better SLE treatments, improved survival for patients with a more recent diagnosis may reflect more effective cardiovascular treatment strategies and better management of infectious complications.
The current study has both strengths and limitations.
Multiple regression analysis adjusting for age and sex determined the following baseline characteristics as being independent risk factors for death:
  • Systolic blood pressure ≥180 mm Hg, HR 3.3 (95% CI 1.4 to 8, P=0.007)
  • Class III (focal segmental) nephritis, HR 8 (95% CI 3.1 to 20.6, P<0.0001)
  • Class IV (diffuse proliferative) nephritis, HR 38.9 (95% CI 7.1 to 212.7, P<0.0001)
End-stage renal disease developed in 25 patients, and cumulative renal survival at five, 10, 15, and 20 years was 87%, 83%, 76%, and 73%, respectively. The finding that cases of end-stage renal disease continued to be observed long after diagnosis refutes earlier data suggesting that most cases occur within the first decade, the researchers said.
Multivariate analysis found these baseline characteristics to be independent risk factors for end-stage renal disease:
  • Serum creatinine level ≥140 μmoles/L, HR 3.6 (95% CI 1.5 to 8.6, P=0.003)
  • Systolic blood pressure ≥180 mm Hg, HR 4.2 (95% CI 1.4 to 12.7, P=0.01)
  • Duration of nephritis ≥6 months before first biopsy, HR 4.2 (95% CI 1.7 to 10.3, P=0.002)
The fact that elevated systolic blood pressure was predictive of both outcomes underscores the importance of hypertension control in these patients, according to the investigators.
In addition, "both delayed renal biopsy and serum creatinine level ≥140 μmoles/liter came out as strong predictors of [end-stage renal disease], confirming the negative prognostic impact of an increased serum creatinine level at the time of the first renal biopsy and delayed intervention," they observed.
The use of cyclophosphamide for induction therapy -- more common in the 1980s and '90s -- did not appear to influence patient or renal survival. An explanation for this, the investigators said, could be that the overall improved survival seen during the study period was a result of more effective cardiovascular strategies and better management of infections.
Strengths of the study include its almost complete tracking of study subjects. Limitations include the study's retrospective design and its lack of data on postinduction therapy, which prevented the investigators from being able to assess the impact of newer treatments and maintenance regimens on outcome.
"Our findings indicate that focal segmental histopathology at disease onset constitutes an important risk factor for death among [lupus nephritis] patients," they concluded.
"Moreover, the current data highlight the importance of early intervention, blood pressure control, and long-term follow-up."
The lead author's work was supported by the Scandinavian Journal of Rheumatology, and one co-author was supported by the Novo Nordisk Foundation.
 

Statistics on Lupus from the LFA

http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroomreporters.aspx?articleid=247&zoneid=60

Cases of Lupus
  • The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
  • Although lupus can strike men and women of all ages, 90 percent of individuals diagnosed with the disease are women.  Most people will develop lupus between the ages of 15-44. 
  • Systemic lupus accounts for approximately 70 percent of all cases of lupus. In approximately half of these cases, a major organ, such as the heart, lungs, kidneys or brain, will be affected.  Cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of all lupus cases.  Drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications.  The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.
  • In approximately 10 percent of all cases, individuals will have symptoms and signs of more than one connective tissue disease, including lupus. A physician may use the term "overlap syndrome" or "mixed connective tissue disease" to describe the illness.
  • 20 percent of people with lupus will have a parent or sibling who already has lupus or may develop lupus.
  • About 5 percent of the children born to individuals with lupus will develop the illness.
  • Lupus is two to three times more prevalent among women of color -- African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders -- than among Caucasian women.  
  • It is difficult to determine the annual number of new lupus cases, or the number of individuals who die from health complications of the disease. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span.  However, it is believed that between 10-15 percent of people with lupus will die prematurely due to complications of lupus. 
  • The U.S. Centers for Disease Control and Prevention issued a report in May 2002 which indicated that deaths attributed to lupus increased over a 20-year period, particularly among African American women ages 45-64. However, it is not clear if the rise is the result of an actual increase in lupus mortality or better identification and reporting of deaths due to complications of the disease. Trends in Deaths from SLE -- United States, 1979 - 1998
Economic Impact
  • A study reported in October 2008 found that the average annual direct health care cost of patients with lupus was $12,643.  The study's authors also determined that the mean annual productivity costs (lost hours of productive work) for participants of employment age (between the ages of 18 and 65) was $8,659. Thus, the mean annual total costs (combining direct costs and productivity costs for subjects of employment age) was $20,924.
  • According to a Lupus Foundation of America membership survey, one in four patients receive their health care through a government-sponsored program, such as Medicare or Medicaid.
  • Two of three lupus patients reported a complete or partial loss of their income because they no longer are unable to work fulltime due to complications of lupus.
  • One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.
Awareness
  • While lupus is a widespread disease, awareness of the disease lags behind many other illnesses.
  • In a nationwide poll of 1,000 adults conducted for the LFA, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus.
  • In an another survey, only four of ten young adults ages 18-24 claimed to be aware of lupus, even though the disease often strikes during the childbearing years.
  • While 65% of respondents to this survey claimed awareness of lupus, only 20% could correctly answer basic questions about the disease.
Diagnosis and Treatment
  • A LFA survey of its members suggests that more than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.
  • Nearly half of the survey participants (49%) received their diagnosis of lupus after being examined by a rheumatologist, a medical specialist who treats diseases of the connective tissue.
  • Four of ten lupus patients are treated by three or more doctors, and take six or more medications to treat symptoms of the disease.
Other Autoimmune Diseases
  • One of three patients responding to the LFA membership survey reported they had another autoimmune disease in addition to lupus, and almost half had a relative with lupus.
  • Autoimmune diseases like lupus often run in families.
Coping
  • Most lupus patients reported that they are coping well with lupus (78%), and that other family members are understanding and supportive (72%).
  • People with lupus named other family members (84%) and friends (72%) as their primary support network.
  • The survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus. 
  •  
  • Lupus: What You Need To Know
    Written by Wendy Leonard

    Lupus is a  “major women's health disease that has too long gone devastatingly under-recognized.”  ~~U.S. Department of Health & Human Services

    The task is daunting – the responsibility is huge. How do we, as a society, meet the public health goal of reducing health disparities in our nation by the year 2010, which was set forth by Federal agencies including the Centers for Disease Control, the National Institutes of Health, the Food & Drug Administration, the Office of Population Affairs, and the Agency for Healthcare Research and Quality?

    The answer, for your consideration, is the following: Investing precious healthcare dollars in lupus research would bring our country exponentially closer to realizing our nation’s healthcare goal of reducing health disparities. The return on investment would be tremendous.

    Here’s some background: In just the past four years, the Department of Health & Human Services (which oversees the Centers for Disease Control and Prevention) estimates that the number of Americans suffering from lupus has skyrocketed from 239,000 to upwards of 1.4 million – making lupus more common than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis and cystic fibrosis. 

    “It’s important to get a handle on lupus,” explains the CDC’s Medical Epidemiologist, Dr. Charles Helmick. “Understanding Lupus is important for understanding other autoimmune diseases, and, understanding why there are such disparities by race and sex in lupus.”

    What type of health disparities? For example, “Black, middle-aged women, age 45 to 64, not only had the highest death rate, but they had the biggest increase in death rates over the past 20 years. It went up nearly 70 percent, and that's startling information,” states Dr. Helmick.

    This totally egregious gap in health disparities additionally includes that fact that:
    ·       Over 36% of lupus deaths occur between the ages of 15 and 44, thus striking our nation’s people during the prime of their lives.
    ·       Lupus is 3 times more common in African-American women (who are also 3 times more like to die from it) than Caucasian women.
    ·       Women die from lupus at 5 times the rate of men.
    ·       Lupus primarily develops in young women of childbearing years, although men and children also develop this disease.
    ·       And, there’s been a staggering 70% increase in the death rate of African-American women with lupus, as stated by the CDC’s Dr. Helmick.

    What exactly is Lupus? Lupus is a devastating autoimmune disease in which your immune system launches a brutal attack against your own body’s cells, tissues and organs– including your heart, lungs, joints, nervous system, skin, blood vessels and brain. 
    The CDC describes lupus as a major cause of arthritis that can “affect multiple organs and cause widespread symptoms”.  Lupus, together with other forms of arthritis, has a dramatic impact on the U.S. economy of nearly $125 billion a year:
    •    $42.6 billion in direct medical costs
    •    $82.2 billion in loss of productivity and other indirect costs.

    In fact, according to the National Institutes of Health’s “Strategic Research Plan to Reduce and Ultimately Eliminate Health Disparities” – which specifically addresses Lupus – research is the key to advancing our understanding of the development and progression of diseases and disabilities that contribute to health disparities in minority populations. This plan, incidentally, was designed to work in tandem with Health People 2010. As noted by Dr. Helmick, “This is important because of the health objectives for the nation. The Healthy People 2010 document aims to reduce and actually eliminate disparities.”

    Unfortunately, according to Health, United States, 2005 – the 29 annual report on the health status of the Nation prepared by the Secretary of the Department of Health & Human Services for the President and Congress, “Even as progress is made in improving both quantity and quality of life...It is equally important to keep in mind that these improvements have not been equally distributed by income, race, ethnicity, education and geography.”

    These finding are echoed by the National Institutes of Health, Strategic Research Plan to Reduce and Ultimately Eliminate Health Disparities Fiscal Years 2002 -2006, which found that: “Despite notable improvements in the overall health of the Nation in the last two decades, there continue to be striking disparities in the burden of illness and death experienced by African Americans, Hispanics, Native Americans, Alaska Natives, Asians, and Pacific Islanders.”

    This travesty is not surprising, because according the National Institutes of Health’s Data Book, the prior Congress actually decreased the portion of the total health dollar allocated to research from 5.8 cents in 2004 to 5.5 cents in 2005.

    What can be done – right now? We are urging members of Congress to send a letter to the House and Senate Department of Defense (DOD) Appropriations Subcommittees in support of line-item funding for lupus research in the Defense Appropriations bill; there is indeed precedence for this, as there are a handful of diseases that currently receive line-item research funding.

    Who are we? We’re the Alliance for Lupus Research (ALR). Launched in 1999 and chaired by Robert Wood Johnson IV, the ALR has already committed over $42 million dollars to supporting Lupus research – making it the largest private source of funds for Lupus research in the world.  Of note, our Board of Directors pays all operating costs; thus, ensuring that 100% of all donations are allocated to the most promising, scientifically valid research projects.

    For more information about lupus and the Alliance for Lupus Research, and to learn more about what you can do to help, please go to www.lupusresearch.org, or call us directly at (212) 218–2840. Thank you so much for supporting this vitally important public health issue.

    EVALUATION OF THE MORTALITY IN SYSTEMIC LUPUS
    ERYTHEMATOSUS (SLE): ANALYSIS OF 2021 PATIENTS

    F. Gharibdoost, S. Akbarian, M. Akbarian, F. Shahram, A. Nadji, A.R. Jamshidi and F. Davatchi
    Department of Rheumatology, Shariati Hospital, School of Medicine, Tehran University of Medical Sciences, Tehran,
    Iran
    http://diglib.tums.ac.ir/pub/magmng/pdf/1041.pdfAbstract- Lupus erythematosus (LE) is an autoimmune disease. The mortality rate and causes of death are different in
    various countries. The present study is done to find out the causes of mortality in the systemic lupus erythematosus (SLE)
    patients in lupus unit of Rheumatology Research Center and other wards of Shariati Hospital. This study was retrospective
    according to medical records of patients who were referred to Lupus Unit of Rheumatology Research Center, ICU,
    Gynecology and Nephrology wards of Shariati hospital during 10 years, from 1991 till 2001. Of 2021 recorded patients'
    files, 165 (7.8%) deaths were already recorded. 84.8% were female and 15.2% male. The duration of disease was 36±12
    months. The mean duration of follow up from entering the study till time of death was 25.9±16.8 months. The causes of
    mortality were as follows: infection (12.1%), respiratory (8.5%), CNS (13.9%), kidney (3.6%), malignancy (1.2%),
    unknown (7.8%), active lupus (3%). Infection accompanied with other causes (27.9%), respiratory with other causes
    (11.5%), CNS with other causes (5.5%) and renal with other causes (4.8%). Infection is the most common cause of death in
    SLE Iranian patients, which is compatible with some multicentric studies. But in some previous studies myocardial
    infarction was reported as the main cause of death.
    Acta Medica Iranica, 41(1): 62-65; 2003
    Key Words: Systemic lupus erythematosus (SLE), mortality, IRAN
    INTRODUCTION
    Systemic lupus erythematosus (SLE) is an
    autoimmune disease with unknown etiology in which
    various immune reactants are produced against nucleus,
    cytoplasm components and cell wall. It causes tissue
    damages in all body organs. This disease gains one
    thousand different aspects and various clinical and
    laboratory features in a way one could not find two
    patients with lupus diagnosis alike. The first report
    published, 707 Iranian patients studied, however, the
    causes of mortality were not considered (1). Urowitz
    reported the causes of death in 665 patients with SLE as
    follow: Infection (32%), active lupus (16%), vascular
    accident (15%), sudden death (8%), malignancy (6.5%),
    unknown (10%) (2). Dubois and his colleagues come to
    this conclusion that the pattern of mortality has changed
    in patients who suffer from SLE. The kidney and CNS
    involvements as causes of death have decreased. Kelley
    reviewed the causes of mortality in some studies and
    concluded infection and severe nephritis as the most
    common causes of mortality in SLE patients.
    Received 18 December 2001; accepted 11 December 2002
    Correspondence:
    F. Gharibdoost, Department of Rheumatology, Shariati Hospital, School
    of Medicine, Tehran University of Medical Sciences, Tehran, Iran
    Tel: +98 21 8025966
    Fax: +98 21 8026956
    E-mail: Egharibdoost@hotmail.com rrc@sina.tums.ac.ir
    He considered the other manifestations of SLE, which
    were generally fatal as follows: carditis, pneumonitis,
    pulmonary hypertension, cerebritis, cardiovascular
    accident, myocardial infarction, intestinal perforation
    due to vasculitis and extracranial arterial thrombosis (4).
    The present study is done to find out the causes of
    mortality in the SLE patients at Rheumatology Research
    Center, Shariati Hospital, Tehran, Iran.
    MATERIALS AND METHODS
    This study was retrospective according to medical
    records of patients who were admitted in Rheumatology
    Research Center, ICU, Gynecology and Nephrology
    wards of Shariati hospital during 10 years (1991-2001).
    In Rheumatology Research Center for each patient
    in addition to establishing accurate usual medical file, a
    specific page, which defines 266 clinical and laboratory
    parameters is recorded and is specific for each patient.
    Patients regularly were visited just in appointment in
    SLE clinic. In each visit including positive points in the
    specific document, patients' complaints, clinical
    findings and laboratory results and opinion of
    professors in rheumatology research center about
    condition of disease, method of continuing treatment
    and required laboratory tests were recorded in the file.
    Acta Medica Iranica, Vol 41, No 1 (2003)
    63
    On the basis of records, after elimination of some
    cases from 1991-2000, 2021 patients with SLE were
    investigated. The mortality rate was 7, 8 percent (165
    patients), so study was performed in case series method
    where there is no requirement for accurate statistical
    calculations and defining the number of samples. In
    order to analyze data we used SPSS software, chisquare,
    t-test for analyzing and assigning maximum,
    minimum, SD and comparison of various mean data
    were used. In cases with less number of samples,
    Fisher's exact test was used. When assigning prevalence
    percent of various findings, SE was calculated
    (Standard error for percentage).
    RESULTS
    Of 2021-recorded patients in lupus unit of
    Rheumatology Research Center and the other associated
    wards in Shariati hospital, 165 (7.8%) deaths were
    Table 1. The cause of death in lupus patients
    Case of death Case Percent
    I Infection 66 40%
    Only infection 20 12.1%
    With other causes 46 27.9%
    II CNS 32 19.4%
    Only CNS 23 13.9%
    With other causes 9 5.5%
    III Respiratory 33 20%
    Only respiratory 14 8.5%
    With other causes 19 11.5%
    IV Kidney 16 8.4%
    Only Kidney 6 3.6%
    With other causes 8 4.8%
    V O.L.R* 7 4.2%
    Only O.L.R 5 3%
    With other causes 2 1.2%
    VI Unknown 6 3.6%
    VII O.N.L.R** 5 3%
    Only O.N.L.R 4 2.4%
    With other causes 1 0.6%
    VIII malignancy 2 1.2%
    * Other lupus related
    ** Other non lupus related
    recorded. Of 2021 patients, 1808 cases (89.5%) were
    female and 213 cases (10.5%) were male. Of 165
    patients who passed away, 140 cases (84.8%) were
    female and 25 cases (15.2%) were male. The average
    age of patients at the time of death was 26 years. The
    most common cause of death was infection (Table 1-7).
    Table 2. Death prevalence evaluation in lupus patients
    according to age
    Gender Cases Percent Real percent Cumulativ
    e
    frequency
    Male 25 15.2 15.2 15.2
    Female 140 84.8 84.8 100
    Total 165 100 100
    Table 3. Total number death prevalence evaluation in lupus
    patients according to age
    Year age Number Percent Real
    percent
    Cumulativ
    e
    frequency
    0-1 7 4.2 4.2 4.2
    11-20 53 31.5 31.5 35.8
    21-30 69 41.8 41.8 77.6
    31-40 27 16.4 16.4 93.9
    41-50 8 4.8 4.8 98.8
    > 50 2 1.2 1.2 100
    Total 165 100 100
    Table 4. Comparison of regular and irregular visiting in
    lupus patients who were died
    Visiting type Cases Percent Cumulative
    frequency
    Irregular 106 64.2 64.2
    Regular 59 35.8 100
    Total 165 100
    Table 5. Prevalence evaluation of various causes of
    mortality in lupus patients who were died
    Cause of death Cases Percent
    Infection 20 12.1
    Respiratory 14 8.5
    CNS 23 13.9
    Kidney 6 3.6
    Other causes associated with lupus 5 3
    Other causes not associated with lupus 4 2.4
    Unknown 6 3.6
    Malignancy 2 1.2
    Infection+other causes 46 27.9
    Respiratory+other causes 19 11.5
    CNS+other causes 9 5.5
    Kidney+other causes 8 4.8
    Other related causes+other causes 2 1.2
    Other related causes+other causes 1 0.6
    Total 165 100
    Evaluation of the mortality in systemic in SLE
    64
    Table 6. Comparison of regular and irregular visiting of
    patients under investigation according to divided causes of death
    Cause of death Irregular
    visiting
    Regular
    visiting
    Total
    Infection+other causes
    41
    62.1
    43.6
    25
    37.9
    49
    66
    45.5
    Respiratory+other causes
    21
    63.6
    22.3
    12
    36.4
    23.5
    33
    22.8
    CNS+other causes
    21
    65.6
    22.3
    11
    34.4
    21.6
    32
    22.1
    Renal+other causes
    11
    78.6
    11.7
    3
    21.4
    5.9
    14
    9.7
    Total
    94
    64.8
    51
    35.2
    145
    100
    Table 7. Comparison duration of disease with regular and
    irregular visiting in patients under investigation
    Visiting type Cases MD SD SE
    Irregular 106 4.3679 3.432 0.333
    Regular 59 0.9746 1.329 0.173
    * SE= Standard error of mean, SD= Standard deviation, MD=
    Mean deviation
    The comparison of two groups who were visited regular and
    irregular and the duration of their disease showed us significant
    relationship (p< 0.05)
    DISCUSSION
    From 2021 patients who were investigated in our
    center from 1991 till 2000, a total of 165 deaths were
    recorded.
    During the period of 11 years, Klom and his
    colleagues studied the causes of death in 229 SLE
    patients with 29% mortality (5). Estes and Christian
    studied 150 patients during eight years with 36%
    mortality (6) , Dubois studied 491 patients in a period of
    13 years with 51% mortality (7) and finally Rosner and
    colleagues reported 21% (8) mortality in 1103 patients.
    Thus by comparison of available data, the death
    expectation is highly more among Iranian patients. This
    result may be due to unknown consequences of many
    expired patients. In our center it was impossible to
    identify exact expired patients, so we did not identify
    the causes of death (6) to (7).
    The 10 years survival of patients were 60% to 95%
    in different reports. Because of unknown consequences
    of many expired patients, it was impossible in
    identifying survival of Iranian patients. The average age
    of patients at the time of death was 26 years that in
    comparison with (2,3) other countries revealed that
    death in Iranian patients occured in lower ages. In
    recent study the average disease period, from onset to
    death was 36±12 months.
    The mean duration of follow up, from entering the
    study till time of death was 25.9±16.8 months. This
    time in Rosner's study, totally for all patients from time
    of entering to study till last visit or death, was
    calculated 43.5±35.2 months.
    The gender distribution of expired patients in our
    study was 84.8% female and 15.2% male. In
    comparison with 89.5% female and 10.5% male in total
    SLE patients, there was no significant difference in
    gender distribution in expired patients. From the
    viewpoint of death causes, infection was the most
    common cause of death (infection 12.1%, infection with
    other causes 27.9%) in our lupus patients. This is
    compatible with multicenteric study of Rosner and his
    colleagues that was 33% (8).
    Although in some other studies the rate of infections,
    as a cause of death, was less than this report (12-19% by
    Dubois).
    The most important point in recent studies is
    introduction of infections as the most common cause of
    death in patients, and believe that although high rate of
    fatal infections in lupus patients during 3rd and 4th
    decades could be relevant to absence of antibiotics,
    these remarkable rate of infections during recent years
    may mostly be related to immunosuppressive therapies
    and high does of corticosteroids.
    Thus we could conclude that increasing dose of
    corticosteroides could lead to an increasing in
    prevalence rate of infections and consequently death of
    patients and this aspect was proven in other studies.
    Therefore, the necessity of cautiously using
    combination therapy with steroids is more evident than
    before.
    REFERENCES
    1. Akbarian M, Shahram F, Davatchi F. Clinical
    manifestation of SLE in Iran. Analysis of 707 patients.
    Journal of Medical Council of Islamic Republic of Iran
    1993; 1:39-51.
    2. Urowitz MB. Mortality in systemic lupus
    erythematosus. XIX ILAR Congress Of Rheumatology,
    Proceeding book 1997: 390-391
    Acta Medica Iranica, Vol 41, No 1 (2003)
    65
    3. Gladman DD, Urowitz MB. Prognostic subsets and
    mortality in SLE. In: Wallace D.J. Dubois, Lupus
    Erythematosus 5 th edition 1997; 1213-1227.
    4. Hahn BH. Management of SLE, in: Ruddy S, Harris
    ED, Sledge CB. Kelley's Text Book of Rheumatology 6
    th edition.W.B. Saunders Company, Philadelphia 2001;
    1125-1143.
    5. Kellum RE, Haserick JR. Systemic Lupus
    Erythematosus, A statistical evaluation of mortality
    based on a consecutive series of 299 patients. Arch
    Intern Med 1964; 113: 92-99.
    6. Estes D, Christian CL. The maternal history of
    systemic lupus crythematosus by prospective analysis.
    Medicine 1971; 50: 85-95.
    7. Dubis EL, Wierchowiecki M, Cox MB, Weiner JM.
    Duration and Death in systemic lupus erythematosus.
    JAMA 1974; 227: 1399-1402.
    8. Rosner, et al. A multicenter study of outcome in
    systemic lupus erythematosus: II. Causes of death.
    Arthritis Rheum 1982; 25: 612-616. 


    SURVEY SHOWS THE BURDEN OF LUPUS ON WORK AND WALLET
    Print E-mail
    Patients, caregivers face significant financial and professional challenges
    ROCKVILLE, Maryland, and RESEARCH TRIANGLE PARK, NC – July 11, 2012 – Results of a Roper survey of the lupus community highlight that in addition to the physical burdens of lupus, the disease can contribute to significant economic challenges among patients and caregivers. Patients with systemic lupus erythematosus (SLE or lupus), caregivers and physicians overwhelmingly agree that career disruptions caused by the challenges of living with lupus often exact a heavy financial and emotional toll, according to the survey.
    A majority of patients, supporters and doctors report that people with lupus change career plans because of lupus, which is a chronic and potentially disabling disease. More than half (63 percent) of respondents with lupus quit working or retired earlier than planned, about two-thirds (67 percent) reduced the number hours worked, and 51 percent of patients changed to a less strenuous job.
    Lupus can occur at any age, but appears mostly in young people aged 15 to 44 – prime working years. Inability to work seems to weigh heavily on patients, emotionally and financially. For example, 82 percent of patients reported that not working makes them feel they are not contributing their fair share to the household, and 83 percent found it devastating to leave their jobs due to lupus.
    Many people with lupus say the disease impacts their productivity and has an undesirable effect on their relationships with co-workers. In fact:
    • 72 percent of patients admit they are not as productive as they could be at work as a direct result of lupus. 
    • Approximately 80 percent of lupus patients say that their condition has caused them to take more sick days. 
    • 59 percent of lupus patients surveyed say that other people think that lupus affects their reliability and dependability. 
    • About two-thirds (69 percent) of patients say they only tell a few co-workers about having lupus.
    “It is important to reinvent yourself in meaningful ways when a chronic illness limits your original life plans,” said Joan Merrill, M.D., chair of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation, and consultant to Human Genome Sciences and GlaxoSmithKline. “However, this is hard to do. Friends and family can help by valuing and supporting a new direction or modified goals.”
    Some people living with lupus have had to think differently about their jobs or careers because they found it difficult to fulfill their responsibilities, due to lupus. As disappointing as this may be, many people living with lupus have been able to find jobs in different or related fields that are more suitable to their situations. There are resources and tips to help you better manage your career, available at UsinLupus.com.

    About the National Burden of Lupus Survey

    The national survey was conducted by Gfk Roper Public Affairs and Communications (GfK Roper North America or Roper) from July through September 2011. It was designed to evaluate the daily and long-term impact of lupus on health, family relationships, career and quality of life, and identify potential gaps in communication. Results were drawn from more than 950 people in the lupus community— 502 people who reported being diagnosed with SLE, 204 supporters (family members or friends) of people with lupus and 251 rheumatologists (physicians who specialize in treating lupus). The survey was funded and developed by Human Genome Sciences and GlaxoSmithKline.
    This release is the second in a series of reports on the National Burden of Disease Survey. For previous releases please visit: New Survey Reveals Lupus Communication Gap as Many Patients Remain Silent on True Impact of the Disease.

    Resources

    People with lupus and those who care for them can visit www.usinlupus.com for online support, information and inspiration. For additional information on lupus, visit the Lupus Foundation of America at www.lupus.org, the Lupus Research Institute at www.lupusresearchinstitute.org, the Alliance for Lupus Research at www.lupusresearch.org and the National Institute of Arthritis and Musculoskeletal and Skin Diseases at www.niams.nih.gov. Except for usinlupus.com, the websites listed are external to Human Genome Sciences and GlaxoSmithKline. Human Genome Sciences and GlaxoSmithKline do not have control over the content of the information provided on these websites and therefore do not warrant their accuracy or completeness.
    ###
    For more information about Human Genome Sciences, please visit the company’s website at www.hgsi.com.
    For more information on GlaxoSmithKline, please visit www.gsk.com.

    About GfK Roper Public Affairs & Corporate Communications

    GfK Roper Public Affairs & Corporate Communications is a division of GfK Custom Research North America. The group specializes in customized public affairs and public opinion polling, media and corporate communications research, and corporate reputation measurement in the United States and globally. In addition to delivering a broad range of customized research studies, GfK Roper Public Affairs & Corporate Communications draws from GfK’s syndicated consumer tracking services, GfK Roper Reports® US and GfK Roper Reports® Worldwide, which monitor consumer values, beliefs, attitudes and behaviors in the United States and more than 25 other countries. The division also serves as the official polling partner of the Associated Press conducting the AP-GfK Poll (www.ap-gfkpoll.com).
    Inquiries:
    Diana Torres
    (212) 819-4895
    Diana.Torres@edelman.com

     
    1. National Burden of Disease Survey, slide 58, patients statistic “Quit working or retired earlier than planned due to lupus”
    2. National Burden of Disease Survey, slide 58, patient statistic “Reduced the number of hours worked due to lupus”
    3. National Burden of Disease Survey, slide 58, patient statistic “Changed to a less strenuous job due to lupus”
    4. NIH. National Institute of Arthritis and Musculoskeletal and Skin Diseases. Lupus. April 2009. http://www.niams.nih.gov/Health_Info/Lupus/do_i_have_lupus.asp. (“Who get’s lupus?” sub section) Accessed December 1, 2011.
    5. National Burden of Disease Survey, slide 61, (50 percent strongly agree/32 percent somewhat agree), patient statistic “Not working makes me feel that I am not contributing a fair share to the household”
    6. National Burden of Disease Survey, slide 61, (58 percent strongly agree/25 percent somewhat agree), patient statistic “Having to leave my job due to my lupus was devastating to me”
    7. National Burden of Disease Survey, slide 60, patient statistic “Because of lupus, I’m not as productive as I could be at work”
    8. National Burden of Disease Survey, slide 60, patient statistic, “Lupus caused me to take more sick days than I would take if I were not affected by lupus”
    9. National Burden of Disease Survey, slide 51, (26 percent strongly agree/33 percent somewhat agree), patient statistic “People think that lupus affects my reliability and dependability”
    10. National Burden of Disease Survey, slide 60, patient statistic, “I told only a few co-workers about having lupus”
    11. The Us in Lupus. “Together we’re empowered.” http://www.usinlupus.com/lupus-support-group/lupus-and-stress/lupus-facts.html (“Relate well” section)
    12. The Us in Lupus. “Together we’re empowered: Your best work.” http://www.usinlupus.com/lupus-support-group/lupus-and-stress/lupus-facts.html (Para 3)
      [ Back ]
 





  •  



Thursday, May 3, 2012

Lupus, stress and alternative health care


One of the hardest things to deal with when having lupus is stress.  It seems like the stress from the disease itself is hard enough, and then adding normal life stressors, or big stressful incidences, makes having lupus almost impossible to bear.  There are many things that can be done either at home or outside the home that can help us deal with our overwhelming stress.  Meditation, massage, support groups either online (here is mine  https://www.facebook.com/Mrs.lupus) or through the LFA, listening to or playing music, exercising, writing, or drawling.  Those are just a few, I hope you can find what works well for you and pass on your knowledge to help others.

Coping With Stress After a Lupus Diagnosis

What are the effects of stress on lupus symptoms? Find out how to cope with stress if you have lupus, to keep your symptoms from getting worse.

Medically reviewed by Pat F. Bass III, MD, MPH
http://www.everydayhealth.com/lupus/living/coping-with-the-stress-of-having-lupus.aspx
If you've been diagnosed with lupus, you may have noticed that many of your symptoms are made worse by stress. Studies show that daily stress, stressful life events, depression, anger, and anxiety can all make the symptoms of systemic lupus worse.
Kathleen LaPlant of Eastham, Mass., was diagnosed with lupus four years ago. "I used to accept a certain amount of stress as a normal part of my life but I have learned that as my stress level builds up my lupus symptoms start to flare up," she says.
Living with a chronic disease like lupus is stressful. Lupus affects all physical, emotional, and social aspects of a person's life, and since lupus is most commonly diagnosed among women in their twenties and thirties, it affects them earlier and longer than most other chronic diseases.
In addition to emotional stress, physical stress such as surgery or infection can also make lupus symptoms worse. Long-term stress can cause a flare of lupus symptoms. This can be a vicious cycle because a lupus flare itself is known to increase stress.
How Does Stress Make Lupus Worse?
Lupus occurs when an abnormal immune system makes antibodies that attack normal cells in your body. Stress has been shown to decrease your body's control over your immune system. When the immune system gets too active, lupus symptoms get worse.

When you are under stress, your body releases a stress hormone called epinephrine. Research has found that epinephrine allows lupus antibodies to pass into areas of the brain that cause lupus symptoms like headache, confusion, and fatigue.
How Can You Cope With Lupus-Related Stress?
The following tips can help:
  • Know your limitations. Many people with lupus learn to limit their exposure to stress by avoiding situations that are likely to cause mental or physical stress. "I don't push myself like I used to. I have had to relearn what my emotional and physical limits are," says LaPlant.
  • Understand your disease. Learning to recognize the warning signs of a lupus flare can help you take steps to limit its effects. Common symptoms of a flare include being overtired, increased joint or muscle pain, and the development of a fever, rash, or headache.
  • Stick to a structured routine. Schedule your activities to include regular exercise, maintain a good diet, get plenty of rest, and see your doctor regularly. "I have learned that getting overtired increases my stress, so I keep to a routine. If I'm reading or watching TV and it's getting late, I turn off the lights and go to bed. No more late nights," LaPlant says.
  • Find the right stress management techniques. Relaxation techniques, like meditation or deep breathing, have been shown to be excellent methods of reducing stress. You may have to try several things before you find what works for you. "When I start to feel stressed, I relax by playing the piano for awhile. I have also found that keeping a journal helps. Activities that quiet my mind prevent stress buildup," says LaPlant.
  • Use your support system. Your support system might include family and friends, or a more structured lupus support group. The Lupus Foundation of America can help you find support groups in your area and can be a good resource for information and advice. The foundation provides support groups and patient education through a nationwide network of chapters and branches.
  • Be your own advocate. Studies show that people with lupus who take an active role in their treatment and learn about their disease experience fewer symptoms and require fewer doctor visits.
"Having a lupus diagnosis isn't always fun but you can learn to live with it. People should know that they need to be their own best advocate. Learn to listen to your body and learn how to take good care of yourself. You can go on leading a full life," LaPlant says. People with lupus can and do lead active and productive lives. Managing stress by making appropriate lifestyle changes, getting support, and understanding your disease can help.

Preventing a Lupus Flare

Flares are an unfortunate part of living with lupus, but lifestyle changes can reduce your risk of flares. Eating a healthy diet, exercising regularly, avoiding stress, and staying out of the sun will help.

Medically reviewed by Lindsey Marcellin, MD, MPH
http://www.everydayhealth.com/lupus/preventing-flares.aspx
One of the hardest things about living with systemic lupus is coping with unpredictability; if you have lupus you will go through periods when your disease seems to be quiet and periods when your it's active and your symptoms worsen. These periods of feeling worse are known as lupus flares. Although there is no way you or your doctor can completely predict or prevent a lupus flare, you can identify and try to avoid known triggers to reduce your risk of flares. Making appropriate lifestyle changes can also help to reduce your risk of getting hit with a lupus flare.
"Some of the common triggers in systemic lupus are sunlight, infections, and stress," says Anita Bishnoi, MD, a rheumatologist at Henry Ford Hospital in Detroit, Mich. Other common triggers include being overtired, starting or stopping medications, becoming pregnant, or undergoing any physical stress such as surgery or an injury.
Lupus Flares and Lifestyle Changes
"The best thing you can do is just live a healthy lifestyle," says Ellen Ginsler, MD, professor of medicine and chief of rheumatology at the State University of New York Downstate Medical Center, in Brooklyn, N.Y. "Stay active, eat a healthy diet, stay out of the sun, and don't smoke."

Other things you can do include:
  • Visiting your doctor regularly. To maintain your health, make sure you stick to scheduled doctor visits and let your doctor know if symptoms seem to be getting worse.
  • Getting plenty of rest. Manage your schedule to avoid becoming overtired or overworked. http://www.healthline.com/health/lupus-support/lupus-and-stress
  • Watching out for stress. Some stress is unavoidable and having a chronic disease is stressful in itself, but it's important for lupus patients to avoid putting themselves in stressful situations when possible. Learn some techniques that help you manage your stress. Meditation is an excellent way to reduce stress and decrease your risk for a lupus flare.
  • Avoiding physical stress. Regular exercise is a great way to stay strong and fit. If you need to undergo a procedure that will require recuperation time, schedule it when your lupus is not active. It's best to wait to get pregnant until your doctor clears you for it, for the same reason.
  • Avoiding sunlight whenever possible. If you have to be in the sun, use a sunscreen with a high sun protection factor (SPF 15 to 30) and wear protective clothing. Remember that halogen and florescent lights also give off ultraviolet light, so avoid prolonged exposure to them as well.
  • Taking your medications as prescribed. Never start or stop a medication without checking with your doctor first. Many medications, including some over-the-counter drugs, can trigger lupus flares. Ask your doctor or pharmacist for a list of these medications so that you can avoid them.
What Should You Do If You Sense a Lupus Flare Coming On?
Many people with lupus eventually become tuned into their body's rhythms enough to sense when a possible flare is coming. At these times you can rest and use stress management techniques, but once actual symptoms of a flare begin you shouldn't try to handle it on your own. Some common flare symptoms include:
  • Increased fatigue
  • New or worsening rash
  • Joint and muscle pain
  • Headache or dizziness
  • Stomach ache
  • Fever
  • Any new symptoms
When you think a flare is starting, it's best to see your doctor as soon as possible.
The best way to manage lupus and avoid flares is to learn as much about your disease as you can and to follow these simple guidelines: Listen to your body, learn what your own triggers and early warning signs are, stick to your lupus treatment plan, and take good care of yourself.

Controlling Stress Helps Fight Chronic Diseases Such As Lupus

ScienceDaily (Aug. 2, 2007) — Lupus is an autoimmune disease which produces antibodies causing injuries to the body’s cells and tissue. It makes the immune system go out of control and the organism attack healthy cells instead of the germs on them. This pathology, which affects more than 5 million people around the world, is more developed in women of fertile age between 15 and 44 years old.
http://www.sciencedaily.com/releases/2007/08/070802090644.htm

A study conducted in the Department of Medicine at the University of Granada determined that daily stress (which occurs in circumstances of little importance but of high frequency) could exacerbate the symptoms of patients suffering from lupus. In other words, controlling the stress level of those suffering from this disease allows the determination of its negative effects, such as inexplicable loss of weight, feeling of fatigue, continuous fever or pain and inflammation in joints.
This study, carried out by Dr. Nuria Navarrete Navarrete and led by researchers Juan Jiménez Alonso and María Isabel Peralta Ramírez, aimed to check the effects of stress treatment in patients suffering from lupus and with high levels of stress. A team of psychologists from the University of Granada applied a therapy to fight stress in a group of 45 patients suffering from lupus to teach them how to manage their stress to reduce the negative effects of this disease.
Results showed that patients who received psychological therapy signifcantly reduced their levels of stress, anxiety and depression, achieving levels even lower than those of the general population. Furthermore, they significantly improved their quality of life both at a physical and psychological level and presented fewer skin and musclar skeletal symptoms, which usually appear in patients suffering from lupus.
Managing daily stress
Nuria Navarrete explains that lupus is a chronic disease whose course is unpredictable. Patients alternate periods of clinical stability with others in which there are symptoms and signs showing that the disease is active. In addition, there are certain factors such as stress which may cause crisis and, therefore, worsen the prognosis of the disease.
Daily stress is very common in patients suffering from lupus. Apart from the usual circumstances which produce anxiety in a healthy population, other effects include knowing that your body suffers from a chronic disease which is controllable but incurable and of uncertain prognosis that requires chronic treatment (in some cases for the rest of their life) and which have important secondary effects.
The results of this study highlighted the importance of dealing appropriately with patients suffering from lupus and, by extension, from other chronic diseases. “According to our results, attention on other psychological aspects is essential to achieve an effective global treatment of the patient”, says Navarrete.
In other words, the treatment of daily stress, together with the usual pharmacological treatment, is a useful weapon when treating patients suffering from lupus. “We think that this treatment could be useful from the moment in which the disease is diagnosed, as patients may require help to manage their stress and minimise its negative effects,” says researcher Navarrete.
Part of the results of this study were published in the journals “Psychosomatic Medicine” and “Revista Clínica Española”.

Massage Therapy as a Lupus Treatment Tool

From Jeri Jewett-Tennant, MPH, former About.com Guide
About.com Health's Disease and Condition content is reviewed by our Medical Review Board
http://lupus.about.com/od/diagnosisandtreatments/a/LupMassTher.htm
Description: Massage Therapy as a Lupus Treatment Tool
Mark Webber of Australia and Red Bull Racing receives a massage from his personal trainer Roger Cleary following qualifying for the Bahrain Formula One Grand Prix at the Bahrain International Circuit on April 5, 2008 in Sakhir, Bahrain.
Where one method of treating systemic lupus erythematosus will work for one individual, it may have little affect on another. Thus it is common for someone suffering from lupus to explore various ways to treat the symptoms of the disease, notably pain caused by inflammation, a hallmark of the disease.
Some methods, like massage therapy, are considered complementary and alternative medicines (CAM), defined as a group of diverse medical and health care systems, practices and products that are not presently considered a part of conventional medicine. These approaches come as novel to some and completely familiar to others. Massage therapy, for example, is a time-honored method of pain and stress relief.
It is important to note, however, that the Lupus Foundation of America does not recommend medications, products or methods not approved by the U.S. Food and Drug Administration or the American College of Rheumatology, further stating on its web site, “remedies that have not undergone the scrutiny of scientific investigation, lack the crucial information and data necessary to enable physicians to make sound recommendations regarding substances.”
Before exploring any new treatment option, then, it is best to talk with your healthcare provider.

Massage Therapy

The use of massage therapy as pain management tool continues to gain popularity in the United States. One survey found that 5 percent of 31,000 participants had used massage therapy in the previous year and nearly 10 percent had engaged in therapy at least once in their life. And, increasingly, healthcare providers are discussing massage therapy with their patients as a way to complement their conventional medical treatment (another survey found that 63 percent of massage therapists received referrals from healthcare professionals).
There are dozens of massage therapy methods, but all follow the same basic principles and practices: pressing, rubbing, and manipulating the body’s muscles and soft tissues, in an effort to relax the patient and decrease his or her physical pain. This is achieved by increasing the flow of blood and oxygen to the massaged areas, warming and relaxing them.
Massage therapy is performed by a licensed therapist who may use a number of different techniques. Long strokes and friction on the muscles is the hallmark of a therapist who prefers Swedish massage. Patterns and deep pressure applied by individual fingers to the knotted muscles and muscle layers is part of a therapist’s deep tissue arsenal. And a therapist who applies varying, rhythmic pressure from the fingers to zones on the body corresponding with the body’s vital flow of energy is engaging in shiatsu massage.

The Role of the Massage Therapist

Professionals who provide massages to patients are called massage therapists. They work in a variety of settings, from office locations to house calls and workplace visits.
If you are considering massage therapy, chose a licensed and trained practitioner. Your healthcare provider should be able to refer one to you. And in some cases, conventional medical professionals might also be licensed to perform massage therapy.
Most therapists attend a school or training program and, as stated, a fair number of massage therapists also practice medicine in another capacity, such as a nurse. Study typically covers subjects such as anatomy and physiology, kinesiology, therapeutic evaluation, massage techniques, first aid, legal issues, and hands-on practice.

Treatment, Benefits and Risk

A standard massage therapy session typically lasts a half hour to an hour, but can be shorter or longer. The atmosphere should be relaxed and the patient comfortable.
The therapist may use oil or powder to reduce friction on the skin and employ ice, heat and fragrances as part of the therapy. You should feel free to discuss the techniques he or she will use prior to the therapy session.
And while there are few risks and side effects associated with massage therapy – temporary discomfort, bruising, swelling or an allergic reaction to massage oils are the most common – there are some people who should not receive massage therapy, emphasizing the need to talk to your healthcare professional prior to starting any regime. Those that should not receive massage therapy – or should consult their doctor before getting massage therapy – include:

The Benefits of Exercise in Lupus Management

Exercise can improve your quality of life when you have lupus by helping to prevent fatigue. But be aware of your limitations and how exercise may specifically affect your condition.

Medically reviewed by Lindsey Marcellin, MD, MPH
http://www.everydayhealth.com/lupus/lupus-benefits-of-exercise.aspx
If you have systemic lupus, one of the best things you can do to manage the disease is to become as physically fit as possible.
Studies show that physical exercise can lower the risk of heart disease in lupus patients and is also beneficial in decreasing the risk of osteoporosis. Exercise can also be helpful in managing fatigue and pain and improving overall quality of life for people with lupus.
How Does Exercise Help Lupus Patients?
Here are a few ways that exercise can benefit people with lupus:
  • Fatigue. "Being physically active helps prevent fatigue, a major symptom of lupus," says Amita Bishnoi, MD, a rheumatologist who treats lupus patients at Henry Ford Hospital in Detroit. Studies have shown that lupus patients who participate in an aerobic exercise program are able to reduce their level of fatigue and have more energy throughout the day.
  • Cardiovascular benefits. Heart disease is the leading cause of death for people with lupus. If you have lupus, you're at risk of getting heart disease up to 20 years sooner than the general population. Regular exercise, especially aerobic exercise like walking or biking, can decrease your risk of heart disease.
  • Obesity. Obesity is a common problem in people with lupus. Obesity can increase your level of pain, put more strain on inflamed joints, increase your risk of heart disease, and make your fatigue worse.
  • Osteoporosis. Women with lupus are especially vulnerable to osteoporosis. Loss of bone mass has been reported to be as high as 46 percent in these patients. Weight-bearing physical exercise is an important part of osteoporosis prevention.
  • Sleep disturbances. People with lupus have more problems sleeping than the general population. This can add to lupus fatigue and stress. Many studies show that aerobic exercise is one of the best ways to improve sleep.
  • Quality of life. Because lupus is a chronic and unpredictable disease, it can produce stress and anxiety. Aerobic exercise has been found to reduce depression in people with lupus and improve their overall sense of well-being.
What Kinds of Exercise Work Best?
"Exercise regimens that focus on muscle strengthening and improving endurance are best. Some examples are swimming, walking, low impact aerobics, and bicycling," advises Dr. Bishnoi.
  • Muscle training. Muscle strengthening exercises include isometric exercises where you contract your muscles without movement and and isotonic exercises where you include movement, as in weight training.
  • Be flexible. Flexibility exercises are important in maintaining the full range of motion of your joints. Exercises that stretch your muscles and increase flexibility include Pilates and yoga.
  • Movement therapies. These exercises combine physical movement and techniques to calm the mind. They have been shown to increase flexibly and help relieve pain. Yoga can also be included here, as well as tai chi and qigong.
  • Aerobic exercise. These are activities that increase your heart rate and help build endurance. For aerobic exercise to benefit your heart, you want to get up to about 30 to 50 minutes of exercise at least three times per week.
Avoiding Exercise Risks
Each person with lupus will have different levels of exercise ability. "It may also be appropriate if you are unsure what type of exercise is best for you to consider a consultation with a physical therapist," says Bishnoi.

Another option is to take part in an organized exercise program. This can be a good way to socialize, become active in your treatment, and get support and encouragement. People who exercise in groups often see better results and stay with their exercise program longer.
The level of exercise that's safe for you may change if your lupus symptoms become more active. If you have a flare of your lupus symptoms, you may need to reduce or stop your exercise activity to prevent damage to inflamed joints and muscles and to avoid fatigue. Although exercise can help prevent fatigue, too much exercise can trigger a lupus flare-up. You'll need to find the right balance and avoid pushing yourself too hard. Always check with your doctor to see what level of exercise is best for you.

Meditation for Combating Fatigue and Stress

http://www.lupus.org/webmodules/webarticlesnet/templates/new_about.aspx?articleid=502&zoneid=2
Nanette Greene hasn’t always been a Zen guru. “I became interested in Eastern philosophies in my twenties, but didn’t know much about it,” says the Easton, Conn., yoga and meditation instructor, now 44. But then one day her lupus flared badly—and a happy accident occurred. She was in too much pain to see her own doctor in New York, so she visited a local doc who ended up teaching her how to meditate.
“As I lay flat on the floor, he showed me how to visualize the sun moving over me, healing me,” says Greene, who admits she was a little lost at first. But she repeated the routine every day and, ultimately, her symptoms subsided.
Best of all, meditation profoundly changed her outlook on life. “I felt a shift in the way I perceived my own healing. I learned to treat my body with compassion,” she says.
Mainstreaming Meditation
Nanette is not alone. Many people with chronic illnesses are finding that meditation helps them cope better. And many more doctors are prescribing the ancient Eastern practice.
“It is part of a holistic approach to treating patients, where we address both their physical and mental states,” says Oscar Gluck, M.D., of the Arizona Rheumatology Center in Phoenix, Ariz. “Meditation is extremely useful in treating chronic illness because it can decrease stress levels and increase the level of endorphins.”
Research conducted at the Center for Women’s Healthcare, at Weill Medical College of Cornell University, has found that endorphins encourage white blood cells, those foot soldiers of the immune system, to enter the blood stream. Endorphins also can improve a patient’s perception of pain.
“There’s a strong association between the perception of pain and the way [lupus] occurs. Meditation gives patients some control over their emotional response, which can alleviate symptoms like depression, anxiety and insomnia,” Gluck says.
There are physical benefits, too. The Mind/Body Medical Institute at Harvard University recently reported a 36 percent drop in clinic visits by patients with chronic pain who practiced meditation for at least two years.
Learning to Let Go
Meditation was first studied in the U.S. during the 1960s. One of its investigators was Herbert Benson, founder of Mind/Body Medical Institute. In his book Relaxation Response, Benson studied our instinctive response to stress—that panicky decision to battle an enemy or run away (think “fight or flight”). His assertion: when practiced properly over time, meditation can help quiet the savage human beast.
Though times have changed, our response patterns haven’t. Instead of fighting wild animals and natural disasters, we stress over deadlines and rush-hour traffic.
For people with lupus, long-term stress can instigate or exacerbate a flare. This is a dangerous cycle, because lupus flares can also raise a person’s stress levels. For some people, meditation can help get them off that roller coaster.
“Meditation is the act of experiencing your feelings as they come, then letting them go,” says Greene. “You realize that even pain is impermanent, and that initial panic dissipates.”
Living in the Present Tense
So the goal is clear: free your mind and the body will follow. But it often takes practice to engage your spiritual side and kick negativity to the curb.
The first rule of thumb: forget about yesterday—and tomorrow, for that matter—and focus on the here and now.
“Most of the time, our brains are like a tumultuous waterfall—always worrying and obsessing,” explains Joe Arak, a meditation instructor at the Shambhala Meditation Center in Hadley, Mass. “Meditation helps to quiet that mental overactivity.”
Meditation should be a peaceful experience. But, believe it or not, some novices get stressed out over it.
“People become obsessed with doing it right,” says Greene, who offers meditation workshops at the LFA, Connecticut Chapter, where she also serves as program chair.
Her advice: “Don’t think of it as meditation. A lot of times I just call it breathing, because you’re learning to become aware of your body’s natural rhythms, including inhaling and exhaling.”
“It definitely takes focus and dedication,” adds Arak. “Think of meditation like going to the gym or brushing your teeth. You might see results right away, but it’s not meant to be a quick fix. The real benefits come over time.”
Playing Devil’s Advocate
Still, it’s important to note that most of the evidence supporting meditation is anecdotal—and it has its skeptics.
“We still don’t understand a whole lot about the mind-body connection,” says Neal Birnbaum, M.D., of San Francisco–based Pacific Rheumatology Associates. “Alternative therapies may help people, but patients should be careful when they’re committing to a new program.” He recommends setting a timeframe, whether six weeks or six months, so you can judge for yourself whether meditation is right for you.
And, of course, meditation is just one possible element of a well-rounded self-care plan.
“I strongly believe in combining Eastern and Western approaches. I still have flares, and traditional medicine helps cure the symptoms,” says Greene, who strongly believes that meditation has helped lessen her symptoms—and given her a new attitude.
“I’ve learned that I am not my illness,” she says. “I now treat myself with compassion and joy, rather than fear and anxiety.”
Finding Your Inner Mindfulness
Meditation is easy to learn—and most anyone can do it. But some experts suggest that first-timers work with an instructor.
If you prefer to go it alone, here are a few tips that may help:
RSVP for enlightenment. Reserve a good time to meditate, so you won’t be worrying about other appointments and obligations. Find a quiet space where you can be alone. And sit however you feel most comfortable: cross-legged, on a chair or on a cushion.
Take baby steps. Begin by focusing on your breathing. Concentrate on inhaling, filling your nose and belly. Then exhale, and feel your body relax. Start with three minutes of breathing each day for one week. Increase to at least 10 minutes a day.
Let distractions happen. It’s normal for your mind to wander. If you lose your concentration, don’t judge yourself. Just take note of the distraction, and return to your rhythmic breathing. If you get frustrated with frequent distractions, consider meditating with an audiotape or DVD. “Mindfulness Meditation” by Jon Kabat-Zinn comes highly recommended. You also can search the Internet to find information on various methods of meditation.
Be consistent. Try to practice at the same time every day, and don’t give up after a couple of tries. Consistency is an important part of discipline.

Imagine Your Way to Peace

Use guided imagery to relieve stress and promote relaxation.
http://awomanshealth.com/imagine-your-way-to-peace/
A little stress is good because it keeps us sharp, focused, and alive. Unfortunately, more is not better. Chronic stress depletes us and can negatively impact our health. If you are experiencing chronic, overwhelming stress, you know how vicious the cycle can be—and how difficult it is to hop off the stress merry-go-round. It’s frustrating when people tell you, “Don’t stress,” or “Just relax” because it’s not that simple—but what if it could be?
Our brain perceives whatever we feed it—real or imagined—as real, and our body actually responds physiologically to the images that play in our brain. Guided imagery is a simple relaxation technique that can help you achieve a relaxed and focused state. It turns out that daydreaming might be good for us after all.
What is Guided Imagery?
The mind-body connection has been well documented. Guided imagery is a technique that utilizes all of your senses to help you engage in a vivid imagery exercise that allows you to feel like you are experiencing something simply by imagining it.
Guided imagery is different than daydreaming because it is more directed and focused. In fact, there are several guided programs and audios available to navigate people through guided imagery sessions. During a guided imagery session, you may imagine yourself in a place—and then imagine the sights, sounds, smells, feelings, and even taste you would experience in such a location.
Guided imagery can be used for many purposes. Athletes use it to visualize the desired outcome of their performance. It is also helpful for overcoming phobias (such as the fear of public speaking) or achieving goals (such as weight loss). Guided imagery is an excellent tool for stress relief and has been shown to reduce blood pressure and promote relaxation. Imagining yourself in a peaceful setting can help you to relax and de-stress.
Using Guided Imagery
Guided imagery is safe, effective, and easy to learn. You may choose to use an audio program or engage the help of a therapist or instructor, but you can easily follow your own script to create your own peaceful session.
1. Set aside 10-15 minutes of uninterrupted time in a place where you’ll be free from distraction.
2. Get into a comfortable position, either sitting or lying down.
3. Take a few deep, cleansing breaths.
4. Begin to envision yourself in a peaceful, relaxed setting. For some people, this might be a tropical beach and for others, it could be sitting around a campfire telling stories. Choose what feels peaceful and wonderful to you.

5. As you begin to envision your peaceful place, start to engage all of your senses to complete the picture. If you’re at the beach, you might hear the sound of the surf, feel the sand in your toes, smell the ocean breeze, and taste the tropical fruit. Or, if you’re snuggled into a winter cabin, perhaps you can feel the warmth of the fire, hear the crackling logs, and taste the sweet hot chocolate. Get specific as you imagine your scene. Focus on the details.
6. Stay in your “happy place” as long as you wish. Relax and sink into the peaceful feelings your imagery evokes.

Acupuncture: A Treatment Tool for Lupus?

From Jeri Jewett-Tennant, MPH, former About.com Guide
http://lupus.about.com/od/diagnosisandtreatments/a/LupAcup.htm
About.com Health's Disease and Condition content is reviewed by our Medical Review Board
Description: Acupuncture: A Treatment Tool for Lupus?
Acupuncture is an ancient form of treatment to alleviate pain.
Getty Images
Treatments for systemic lupus erythematosus vary by patient and by healthcare practitioner, as one method can work well for one individual and have little affect on another. So, it is not uncommon for someone to explore various ways to treat her symptoms -- especially pain caused by inflammation, a hallmark of the disease.
Some of these methods, such as acupuncture, are considered part of complementary and alternative medicine (CAM). They have been used by various cultures for many generations. CAM is defined as a group of diverse medical and healthcare systems, practices and products that are not presently considered a part of conventional medicine.
It is important to note, however, that the Lupus Foundation of America does not recommend medications, products or methods not approved by the Food and Drug Administration or the American College of Rheumatology, further stating on its website, “remedies that have not undergone the scrutiny of scientific investigation lack the crucial information and data necessary to enable physicians to make sound recommendations regarding substances.”
Before exploring any new treatment option, it is best to talk with your healthcare provider.

Acupuncture

Many Westerners’ first encounter with acupuncture is by way of popular culture. But the actual discipline and the seriousness with which professional practitioners approach the method is very serious.
The practice originated in China more than 2,000 years ago and continues to grow in popularity in the United States and abroad. Although most equate acupuncture with the insertion of hair-thin needles into the skin, the term actually describes many procedures involving the stimulation of specific points on the body (acupoints) to help improve health and well-being.
Some of those techniques include stimulation with heated herbs, magnets, mild electrical current, manual pressure (acupressure), and low-frequency lasers.
Acupuncture is based on the ancient Chinese theory that an essential life energy called qi (pronounced "chee") flows through the body along invisible channels, called meridians. When the flow is blocked or out of balance, illness or pain results. Stimulation of acupoints is thought to correct the flow and restore balance, optimize health, and block pain.
The science behind acupuncture suggests that acupuncture may be associated with neurotransmitter activity in the muscles, spinal cord and brain that trigger the body's release of endorphins ("feel good" chemicals.)
An interesting side note: Researchers studying acupuncture's affect on patients with migraine headaches discovered that patients who underwent clinical acupuncture and those who underwent "sham acupuncture," in which needles are placed randomly on the body, reported similar outcomes. Both groups reported a reduction in headaches. Those researchers attributed the outcome to "nonspecific physiological effects of needling, to a powerful placebo effect, or to a combination of both." The research was conducted by the Centre for Complementary Medicine Research and reported in the May 2005 issue of the Journal of the American Medical Association.

Research

Research studies have shown that acupuncture can reduce nausea and vomiting after surgery and chemotherapy, as well as relieve pain, particularly that associated with osteoarthritis and fibromyalgia. It also reportedly helps ease depression and irritable bowel syndrome connected to arthritis.
Important to lupus patients, however, is a 1997 meta-analysis of 17 studies that discovered that acupuncture seems to be less effective at relieving pain associated with inflammatory diseases such as lupus, rheumatoid arthritis, and local and progressive systemic scleroderma.

Get the Right Help

On the flip side, the body of research on the topic suggests that acupuncture relieves pain for some. If acupuncture is something you're interested in trying, speak with your healthcare provider before starting treatment. It's important, too, that you seek acupuncture treatment from a professional; the treatment is safest when performed by a reputable provider using sterile, disposable needles.
The American Board of Medical Acupuncture certifies clinician acupuncturists, and the National Certification Commission for Acupuncture and Oriental Medicine certifies non-clinician acupuncturists. Certification comprises passing a standardized exam and a demonstration of adequate training.
The FDA regulates acupuncture needles for use by licensed practitioners, requiring that needles be manufactured and labeled according to certain standards. Needles must be sterile, non-toxic, and labeled for single use by qualified practitioners only.

Getting Treated

Acupuncture needles are metallic, solid, and very thin. Those that have undergone acupuncture report experiencing little or no pain from needle insertion. Others report feeling energized during the procedure; still others say they are calmed and relaxed. Your experience will likely vary from that of a friend.
Most complications related to acupuncture are due to inadequate sterilization of needles and from improper delivery of treatments. Practitioners should use a new set of disposable needles taken from a sealed package for each patient, and they should swab treatment sites with alcohol before inserting needles. Make sure your practitioner follows these guidelines.
Your healthcare provider should be able to refer you to a licensed practitioner. If not, websites and professional associations can direct you to an appropriate acupuncturist. Try the American Academy of Medical Acupuncture website. It has a wonderful search function that allows you to find a skilled medical acupuncturist in your area.
Safety Guidelines for Acupuncture
http://www.thelupussite.com/bn19.html
Acupuncture is generally safe, but as with any therapy, you should be cautious. The following guidelines are adapted from the Arthritis Foundation's Guide to Alternative Therapies:
-Get a diagnosis from a medical doctor before undergoing acupuncture to make sure you don't have a condition requiring prompt medical attention.
- Don't stop your medications without consulting your doctor. Acupuncture can work with, rather than instead of, conventional medicine.
- Tell the acupuncturist about all health conditions, including pregnancy. Stimulating certain acupuncture points, particularly those on or near the abdomen, can trigger uterine contractions and could induce premature labour and possibly miscarriage.
- Tell the acupuncturist about all medications you are taking. Some herbs, nonsteroidal anti-inflammatory drugs, and, of course, anticoagulants, can cause you to bleed easily even when thin acupuncture needles are inserted. You should also consult your physician before having acupuncture is you are on such medication.
- Don't take muscle relaxants, tranquillisers, or painkillers right before acupuncture because acupuncture can intensify the effects of these drugs.
- Because you have a compromised immune system, be sure the acupuncturist uses disposable needles.
- Electrical stimulation of acupuncture needles, which is sometimes used to stimulate acupoints, could cause problems for people with pacemakers (as can magnets).
- If you have diabetes, the practitioner should insert needles into your limbs only with extreme caution. Even a small skin cut in a person with diabetic neuropathy can turn into a severe infection.
- Tell the practitioner right away if you experience pain. Acupuncture shouldn't hurt after a possible initial sting with the needle's insertion.
- Do not automatically take herbs offered by traditional Chinese medicine practitioners. They can interact with prescription drugs.
Taken from "New Hope for People with Lupus," used with permission.
Finding an Acupuncturist
Ask your doctor for a referral to a practitioner or contact one of the national acupuncture organisations for a referral. Check if they are certified by the national acupuncture organisation, e.g. National Certification Commission for Acupuncture and Oriental Medicine in the US.
For a list of accredited acupuncturists, contact the following organisations:
USA
National Certification Commission for Acupuncture and Oriental Medicine
Phone: (703) 548-9004
Website - www.nccaom.org
American Academy of Medical Acupuncture
This organisation offers a list of medical doctors and osteopathic physicians.
Phone: (800) 521-2262
Website - www.medicalacupuncture.org
UK
British Medical Acupuncture Society
Website - http://www.medical-acupuncture.co.uk/
British Acupuncture Council
Website - http://www.acupuncture.org.uk/

Cognitive Behavioral Therapy Benefits People with Lupus


What is the topic?

Cognitive Behavioral Therapy (CBT) is a type of psychotherapy that explores the role of thinking in people’s well-being. One previous study investigated the effects of this treatment on stress in people with lupus. That study found that CBT, along with biofeedback, reduced pain and improved coping in people with lupus for up to nine months after the study was conducted.

What did the researchers hope to learn?

The researchers hoped to learn whether CBT could help people with lupus cope with stress, anxiety, and depression, all of which may co-occur with a chronic illness. They wanted to see if they could confirm the results of the previous study and whether benefits could be seen over a longer time period. 

Who was studied?

45 people with lupus, who were found to have a high level of chronic stress by use of a measurement called the Cohen Perceived Stress Scale, participated. The study was conducted at the Systemic Disease Unit in Granada, Spain. People were not included in the study if they were seen for less than a year, or if they were unable to read and write, attend therapy sessions, or receive treatment for a psychiatric condition.   

How was the study conducted?

The lupus patients were interviewed and asked to complete the Perceived Stress Questionnaire to rate their daily stress level. The people with the highest stress levels were randomly divided into two groups. 
This study lasted 15 months, during which time one group received CBT and the other group (called the control group) were not offered any special intervention. Patients in the control group received standard medical care, as well as encouragement to participate in moderate exercise, eat a balanced diet, and get plenty of rest. The therapy group had CBT sessions lasting 1.5 – 2 hours once a week for 10 weeks. About six and nine months later, patients in the therapy group participated in “booster sessions” in order to strengthen their newly learned psychological skills.  


The patients were studied at the time of enrollment, as well as at 3, 9, and 15 months later, with measures of disease activity, psychological parameters, and quality of life.


What did the researchers find?

People in the therapy group improved in both the perception of stress and vulnerability to stress, as compared to the control group, at months 3, 9, and 15.
People in the therapy group also had lower levels of anxiety and depression at months 3 and 15 than they did upon entry into the study, but this was not the case for people in the control group.


People in the therapy group showed improvement in multiple measures of quality of life at some point throughout the study period.


Lupus disease activity (measured by the SLEDAI) was not different in people in the CBT group compared to the control group. Similarly, there was no difference in the number of flares in either group during the year after therapy compared to the year before therapy.


People in both groups were similar in age at lupus diagnosis, duration of illness, level of education, gender, and lupus manifestations.  


What were the limitations of the study?

The number of people who participated in the study was small, which may somewhat limit the applicability of the results. Also, the time at which the “booster” therapy sessions were initiated, as well as their frequency, may not have been ideal in order to optimally observe effects of the therapy sessions, especially after the 10 therapy sessions were complete. 

Editor’s note: “This study suggests the possibility that this type of psychotherapy may be helpful to people with chronic stress, but it is still possible that the extra time spent with the patients in therapy or the special relationships developed with the study doctors were what actually made the difference in their lives.”


What do the results mean for you?

This study suggests that CBT might reduce stress, anxiety, and depression, and improve the quality of life, in people with lupus.

Lupus - Managing Stress & Depression

By Melba Newsome
Reviewed by Jennifer Monti, MD, MPH
http://www.healthline.com/health/lupus-support/lupus-and-stress
Extreme fatigue. An adverse reaction to the sun. Constant joint pain. Living with lupus means never knowing precisely what the day will bring. The unpredictability of the disease can cause depression and other mental health problems, such as stress and anxiety. This is known as reactive depression. Chemical or clinical depression is characterized by feelings of hopelessness and loss of interest in things you once enjoyed. It is a debilitating and prolonged state caused by a chemical imbalance in the brain and requires prompt professional attention.
“Everyone who has a chronic disease experiences depression of one degree or another,” says Patty Dunn, who has lived with lupus for 40 years and has learned ways to cope with the inevitable depression and sadness. Studies have found that between 15 and 60 percent of people with a chronic illness will experience clinical depression. The good news is that there are effective treatments and lifestyle changes that can help combat depression and the symptoms.

Join a Support Group

Whether it is in-person or virtual (online), a support group can help beat back feelings of loneliness and isolation by connecting you with others who share your diagnosis. Support groups are also a great resource for learning coping skills and finding out what’s new in research and treatment. Since joining the Piedmont chapter of the Lupus Foundation of America nearly a decade ago, Patty has shared her experience and strength with hundreds of lupus patients and drawn upon their support during her rough patches.

Be Open With Friends and Family

An erratic disease for which there is no cure can be a strain on any relationship. Many lupus symptoms are not readily visible, so it’s up to you to tell your loved ones how and what you are feeling and what they should expect. Involve them in your care, and tell them what they can do to help.

Meditate on It

Recent studies have found that meditation is a powerful tool for treating depression. It also decreases stress levels and increases the level of endorphins, chemicals in the brain that causes feelings of euphoria. Best of all, meditation can be done almost anywhere at any time.

Be Wary of Drug Side Effects

Corticosteroids are prescribed to counter lupus-related inflammation, but they can also make you more emotional and increase the risk of depression.

Seek Counseling

A recent study found that cognitive behavioral therapy (CBT)—a type of psychotherapy that explores the role of thinking in people’s well-being—is an effective treatment for lupus patients with high stress levels. CBT significantly reduces the incidence of psychological disorders associated with lupus and helps to improve and maintain quality of life. Psychotherapy, alone or in conjunction with medication, can help you better cope with your emotions and illness.

Consider Medication

Antidepressants can help ease the effects of depression, whereas anti-anxiety medicines reduce anxious and fearful feelings. Ask your doctor if they may be right for you. These medications have side effects and may heighten symptoms associated with lupus, such as increased dryness in the mucous membranes. Keep your doctor informed about any physical changes you notice.