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      Winter vaccinations!   11/03/2016

      It is very important for people with chronic diseases, such as SLE,and for those people taking corticosteroids and immunosuppressants, including chemotherapy drugs, should go to their doctor to be immunised against flu. Flu is not a bad cold! It can be dangerous. Apart from the annual flu jab, ask your doctor about the pneumovax vaccine which will help prevent serious problems with the lungs. Those with asthma should also ask about the various kinds of vaccines available. Finally, Herpes Zoster infections can lead to the risk of strokes in certain populations which include, rheumatoid arthritis and SLE. There is a new post with information, along with a video. Be well! Ros
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      Blogs!   03/27/2017

      All registered Members can write their own Blog here! Just click on Blog and select a title!
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      Registration and Validation   06/03/2017

      Thank you for your Registration! Validation is not automatic and will depend on time zone differences!It ought to be no more than 24 hours. If you do not hear within 24 hours, send me a message using the Contact Us! This is to try and prevent spammers, bots etc! When you Sign Up,  Please use the following to complete the Date of Birth entry: nn-nn-nnnn where n=number. Thus, if your birthday is 5th May 1968, enter: 05-05-1968. Use the “-“ separator and not the “/“. Thank you and hope the LuPUS MB is useful to you!  
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      GHIC   09/08/2017

      I am excited to announce that LUpus Patients Understanding & Support (LUPUS) is linking with The Graham Hughes International Charity (GHIC). This means I will be posting articles from Professor Hughes here. About 25% of those with SLE also have Hughes Syndrome. As more research is being done, its findings are extremely important for those who have this condition. Like SLE, diagnosis can take a very long time.

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  1. Sex Differences in Lupus Mortality Mariah Zebrowski Leach, JD, MS Monday, December 4, 2017 Lupus A comprehensive US population-based study identified an average 22-year and 12-year deficit in life expectancy among females and males with systemic lupus erythematosus (SLE), respectively, compared with the general population. Background In the United States, SLE is a source of significantly decreased life expectancy. While marked differences have been observed between the sexes in terms of the incidence, prevalence, and clinical manifestations of SLE, this area is still poorly understood. Falasinnu and colleagues1 at Stanford School of Medicine identified sex-based differences in the causes of death among SLE decedents in the United States and recognized clinically relevant comorbidities that may warrant careful consideration in patients’ clinical management. The study This study examined SLE-related deaths using the 2014 National Center for Health Statistics multiple cause of death (MCOD) database, a population-based electronic medical recording of all death certificates issued in the United States. The analysis considered not only the number of death certificates listing SLE as the underlying cause of death, but also those listing SLE in general. Demographic information considered included age, race/ethnicity, sex, educational attainment, foreign-born status, marital status, and pregnancy status. SLE decedents were compared with non-SLE decedents in the general population belonging to the same age group. The findings In 2014, there were 2,660,497 deaths in the United States, of which 2036 (0.1%) listed SLE among the causes of death. Approximately 86.2% of SLE deaths occurred among females, with a median age at death of 59 years and the highest proportion of deaths occurring between 45 and 64 years of age. In comparison, the overall median age at death for females in the general population was 81 years, and the majority of deaths occurred among females over 65 years of age. Black females experienced the greatest burden of SLE mortality. Approximately 32% of all female SLE decedents were black, compared with only 11% of non–SLE-related deaths in the general population. Female decedents with SLE had a slightly higher proportion of foreign-born individuals than the general population, but there were no other significant demographic differences. The most frequently listed comorbidities among female decedents with SLE were septicemia (4.32%) and hypertension (3.04%). Among male decedents with SLE, the median age at death was 61 years, compared with 73 years in the general population. Of male decedents with SLE, 23.5% were black, compared with only 12% in the general population. The age-standardized mortality was highest among American Indian males. There were no other demographic differences related to SLE among male decedents. The most frequently listed comorbidities among male decedents with SLE were heart disease (3.70%) and diabetes mellitus with complications (3.61%). Implications for physicians and future research This study offers an opportunity to better describe the association between SLE and related comorbidities in the context of mortality, although the MCOD data have a number of limitations. Inaccuracy on death certificates can lead to the underestimation of the SLE mortality burden, and researchers were unable to differentiate between causes of death that were related to the natural age process, disease activity, and drug therapy. Still, the MCOD data provide a comprehensive understanding of the population-based burden of SLE mortality. While female SLE patients tend to have more frequent disease exacerbations, male patients appear to have significantly greater multisystemic damage accrual and disease severity. Greater disease severity among male SLE patients may be related to under diagnosis due to selective attention given to females by physicians during clinical decision-making. This potential for gender bias needs to be carefully considered. Racial minorities generally have a disproportionately higher burden of mortality. The scope and degree of these differences in SLE are particularly pronounced, with mortality rates among black females nearly four times as high as those in white females. “Our findings reinforce the urgent need for interventions that reduce morbidity and mortality in patients with SLE to improve health outcomes and ultimately reduce health disparities,” the researchers write. They note that novel translational research programs are currently underway to attempt to address these disparities. Clinically relevant comorbidities also need to be considered more carefully in the course of patients’ clinical management and the natural history of SLE. This study revealed future targets for the investigation of sex-based differences and directions for epidemiological research. “A comprehensive understanding of causes of death and the related comorbidities can improve clinical diagnostic and therapeutic strategies, impact survival outcomes in patients living with SLE, and enhance population-based disease surveillance estimates,” the researchers conclude. References: 1. Falasinnu T, Chaichian Y, Simard JF. Impact of sex on systemic lupus erythematosus-related causes of premature mortality in the United States. J Womens Health (Larchmt). 2017;26:1214-1221. doi: 10.1089/jwh.2017.6334.
  2. Environmental Factors Tied to Lupus Gregory M. Weiss, M.D. Tuesday, December 5, 2017 Lupus Key points • Ultraviolet light may cause flare-ups in systemic lupus erythematosus (SLE). • The chemicals found in cigarette smoke can worsen the symptoms of SLE. • Estrogen analogues such as oral contraceptives and bisphenol A (BPA), a substance used to make plastic bottles, may increase the risk of SLE. Background SLE affects women and African Americans disproportionately. Dr. Gaurav Gulati at the University of Cincinnati in Ohio points out that even though we have treatments for lupus, a complete understanding of its etiology and progression is lacking. Although genetics clearly plays a role in SLE, it appears that environmental factors may act as triggers in those who are susceptible. Dr. Gulati conducted a review of the literature related to SLE and environmental versus genetic factors; he presented his findings recently in Seminars in Arthritis and Rheumatism. The study A systematic review was conducted that looked at over 100 studies focused on SLE. The results • A triad of factors was found in one study that linked a patient’s genetics, how the patient’s DNA changes over time, and exposure to environmental factors to the development and course of SLE. • Twin studies reveal only a 24% concordance of SLE in identical siblings; this points to a conclusion that a combination of genetic predisposition and environmental factors is involved in the development of lupus. • Heavy metals and other trace elements may be triggers for SLE; uranium, lead, and cadmium are linked to autoimmunity. • Elements such as mercury, nickel, and gold have been implicated in delayed hypersensitivity and inflammation, and a higher rate of lupus has been noted among dental workers. • An increase in SLE has been found in women who take oral contraceptives and in those exposed to xenoestrogens such as BPA, a chemical found in plastics. Implications for physicians • Physicians and particularly rheumatologists who treat patients with SLE should vigorously encourage positive lifestyle modifications such as smoking cessation and avoidance of direct sunlight. • Patients with SLE should be advised to always wear sunscreen. • Rheumatologists should provide regular surveillance to their patients with SLE as changes in disease activity and treatment are warranted. References: Gulati G, Brunner HI. Environmental triggers in systemic lupus erythematosus. Semin Arthritis Rheum. 2017 Oct 5. pii: S0049-0172(17)30469-9. doi: 10.1016/j.semarthrit.2017.10.001. [Epub ahead of print]
  3. Sex Differences in Lupus Mortality Mariah Zebrowski Leach, JD, MS Monday, December 4, 2017 A comprehensive US population-based study identified an average 22-year and 12-year deficit in life expectancy among females and males with systemic lupus erythematosus (SLE), respectively, compared with the general population. Background In the United States, SLE is a source of significantly decreased life expectancy. While marked differences have been observed between the sexes in terms of the incidence, prevalence, and clinical manifestations of SLE, this area is still poorly understood. Falasinnu and colleagues1 at Stanford School of Medicine identified sex-based differences in the causes of death among SLE decedents in the United States and recognized clinically relevant comorbidities that may warrant careful consideration in patients’ clinical management. The study This study examined SLE-related deaths using the 2014 National Center for Health Statistics multiple cause of death (MCOD) database, a population-based electronic medical recording of all death certificates issued in the United States. The analysis considered not only the number of death certificates listing SLE as the underlying cause of death, but also those listing SLE in general. Demographic information considered included age, race/ethnicity, sex, educational attainment, foreign-born status, marital status, and pregnancy status. SLE decedents were compared with non-SLE decedents in the general population belonging to the same age group. The findings In 2014, there were 2,660,497 deaths in the United States, of which 2036 (0.1%) listed SLE among the causes of death. Approximately 86.2% of SLE deaths occurred among females, with a median age at death of 59 years and the highest proportion of deaths occurring between 45 and 64 years of age. In comparison, the overall median age at death for females in the general population was 81 years, and the majority of deaths occurred among females over 65 years of age. Black females experienced the greatest burden of SLE mortality. Approximately 32% of all female SLE decedents were black, compared with only 11% of non–SLE-related deaths in the general population. Female decedents with SLE had a slightly higher proportion of foreign-born individuals than the general population, but there were no other significant demographic differences. The most frequently listed comorbidities among female decedents with SLE were septicemia (4.32%) and hypertension (3.04%). Among male decedents with SLE, the median age at death was 61 years, compared with 73 years in the general population. Of male decedents with SLE, 23.5% were black, compared with only 12% in the general population. The age-standardized mortality was highest among American Indian males. There were no other demographic differences related to SLE among male decedents. The most frequently listed comorbidities among male decedents with SLE were heart disease (3.70%) and diabetes mellitus with complications (3.61%). Implications for physicians and future research This study offers an opportunity to better describe the association between SLE and related comorbidities in the context of mortality, although the MCOD data have a number of limitations. Inaccuracy on death certificates can lead to the underestimation of the SLE mortality burden, and researchers were unable to differentiate between causes of death that were related to the natural age process, disease activity, and drug therapy. Still, the MCOD data provide a comprehensive understanding of the population-based burden of SLE mortality. While female SLE patients tend to have more frequent disease exacerbations, male patients appear to have significantly greater multisystemic damage accrual and disease severity. Greater disease severity among male SLE patients may be related to under diagnosis due to selective attention given to females by physicians during clinical decision-making. This potential for gender bias needs to be carefully considered. Racial minorities generally have a disproportionately higher burden of mortality. The scope and degree of these differences in SLE are particularly pronounced, with mortality rates among black females nearly four times as high as those in white females. “Our findings reinforce the urgent need for interventions that reduce morbidity and mortality in patients with SLE to improve health outcomes and ultimately reduce health disparities,” the researchers write. They note that novel translational research programs are currently underway to attempt to address these disparities. Clinically relevant comorbidities also need to be considered more carefully in the course of patients’ clinical management and the natural history of SLE. This study revealed future targets for the investigation of sex-based differences and directions for epidemiological research. “A comprehensive understanding of causes of death and the related comorbidities can improve clinical diagnostic and therapeutic strategies, impact survival outcomes in patients living with SLE, and enhance population-based disease surveillance estimates,” the researchers conclude. References: 1. Falasinnu T, Chaichian Y, Simard JF. Impact of sex on systemic lupus erythematosus-related causes of premature mortality in the United States. J Womens Health (Larchmt). 2017;26:1214-1221. doi: 10.1089/jwh.2017.6334.
  4. Treatment Target Shows Promise in Systemic Lupus Erythematosus Mariah Zebrowski Leach, JD, MS Monday, December 4, 2017 The lupus low disease activity state (LLDAS) is a promising treatment target in systemic lupus erythematosus (SLE), according to new research. Background Successfully applied in rheumatoid arthritis as well as in non-rheumatic conditions, a treat-to-target approach aims to improve disease outcomes through the achievement of a pre-specified goal. An international task force suggested such a strategy for the treatment of SLE.1 They recommended that the treatment target should be remission or—when that is unachievable—the lowest possible disease activity. LLDAS is a composite definition of minimal acceptable disease activity proposed by the Asia-Pacific Lupus Collaboration (APLC). LLDAS is based on the following criteria: 1. SLE Disease Activity Index 2000 (SLEDAI-2K) ≤ 4, with no activity in major organ systems 2. No new lupus disease activity compared with the previous assessment 3. Safety of Estrogen in Lupus Erythematosus National Assessment (SELENA)-SLEDAI physician global assessment (PGA) ≤ 1 4. Current prednisolone (or equivalent) dose ≤ 7.5 mg daily 5. Well-tolerated standard maintenance doses of immunosuppressive drugs and approved biological agents To be considered a valid treatment target, LLDAS should be protective against damage accrual in the early SLE stages. Piga and colleagues2 at the University Clinic and AOU of Cagliari in Italy sought to determine the frequency of LLDAS achievement and its association with early damage accrual in a homogenous cohort of Caucasian patients with SLE prospectively assessed during the first 18 months of treatment after diagnosis. The study This study primarily aimed to assess the frequency of LLDAS achievement and its association with early damage, with a secondary aim to identify the main reasons for failure to achieve LLDAS. The study cohort consisted of 107 patients from the Cagliari (Italy) SLE cohort between January 2006 and December 2016. To assess LLDAS as a goal for initial treatment, the primary study endpoint was set at 6 months, with 18 months considered an appropriate time to evaluate the effect of maintenance treatment and early damage accrual. At each visit, disease activity was assessed using the SLEDAI-2K score and the PGA. At 18 months, damage accrual was assessed by the SDI and the possible attribution to corticosteroids was done according to a previous definition. Average daily dose of prednisolone (or equivalent) and ongoing use and new prescription of medications were assessed at every visit. The findings At the 6-month point, LLDAS had been achieved by 47 patients (43.9%). At 18 months, 48 patients (44.9%) were in LLDAS; 33 of them had achieved LLDAS at 6 months and were still in this condition and 15 had reached LLDAS for the first time. Of the 59 patients who were not in LLDAS at 18 months, 45 had never been in LLDAS and 14 had been in LLDAS at 6 months but no longer were at 18 months. Thus, despite a seemingly overall stable LLDAS rate, these results demonstrate the dynamic nature of this condition. On univariate analysis, the following factors were significantly associated with failure to achieve LLDAS at 6 months: renal involvement, higher SLEDAI-2K score, positive (> 10 UL/mL) anti-dsDNA antibodies, lower serum C3 and C4 values, and higher prednisolone dose and immunosuppressant drug use. On multivariate analysis, renal involvement and C4 levels were confirmed to be associated with failure to achieve LLDAS. Implications for physicians The limitations of this study are the relatively small sample size, which may have hampered study results, and the retrospective design, which prevented researchers from testing LLDAS criterion validity by comparing it with other treatment targets such as the SLE Responder Index. Nevertheless, by enrolling consecutively diagnosed patients at the time of treatment initiation and following them prospectively, the researchers were able to provide novel data on LLDAS as a potential treatment target. In this study, the most frequent reason for failure to achieve LLDAS 6 months after therapy initiation was daily prednisolone dosage > 7.5 mg. Damage was definitely attributable to steroid use in 40% of cases in this cohort. However, supported by this data and literature evidence on damage development, the researchers consider 7.5 mg/d an acceptable cutoff to define low disease activity during initial treatment. Still, they recommend a lower cutoff should be targeted to minimize risk of steroid-related damage during maintenance therapy in patients with SLE. In this cohort, patients with renal involvement and serological disorders had the lowest remission rate, and renal involvement at baseline was the most important factor associated with failure to achieve LLDAS. “LLDAS is a promising treatment target in SLE, being attainable and negatively associated with damage accrual in the early stages of the disease,” the researchers write. “However, it seems to poorly fit with the heterogeneity of clinical presentation in patients with SLE, mostly in those with renal involvement,” they conclude. References: 1. van Vollenhoven R, Voskuyl A, Bertsias G, et al. Treat-to-target in systemic lupus erythematosus: recommendations from an international task force. Ann Rheum Dis. 2014;73:958-967. 2. Piga M, Floris A, Cappellazzo G, et al. Failure to achieve lupus low disease activity state (LLDAS) six months after diagnosis is associated with early damage accrual in Caucasian patients with systemic lupus erythematosus. Arthritis Res Ther. 2017;19:247. doi: 10.1186/s13075-017-1451-5.
  5. Poverty Stacks the Deck Against Patients With Lupus Gregory M. Weiss, M.D. Tuesday, November 28, 2017 Lupus Poor patients with systemic lupus erythematosus (SLE) who receive Medicaid are less likely to adhere to their treatment regimen than are patients who live in more affluent areas. Adherence to SLE therapy may also be lower in areas with large African American populations and limited access to health care professionals. In addition, Medicaid patients are less likely to take hydroxychloroquine for lupus if they live in areas with fewer hospitals, high African American populations, and low provider numbers. SLE strikes women with greater frequency than men and is more than twice as common in the African American population. Dr. Candace Feldman and colleagues at Harvard Medical School note that compliance with hydroxychloroquine therapy in lupus patients is poor at baseline. “Studies in other chronic diseases demonstrate that where individuals live has a significant effect on their health-related behaviors and on disease control and outcomes,” said Dr. Feldman. It was this premise that led the authors to look into how location and resources contribute to adherence to treatment in SLE. They presented their findings at the recent American College of Rheumatologyannual meeting in San Diego, California. The study Utilizing the Medicaid database, new users of hydroxychloroquine were identified and adherence was measured over a 12-month period. The study included 10,268 subjects with SLE who were new users of hydroxychloroquine. The results • Only 15% of subjects remained adherent to hydroxychloroquine therapy based on taking the drug on 80% or more of days covered. • Zip codes with higher percentages of African American residents had lower odds of adherence. • Adherence was highest in counties with more hospitals and lowest in areas with low numbers of health care professionals. • Living in areas with higher numbers of African Americans and fewer hospitals and health care professionals independently predicted low adherence to hydroxychloroquine therapy. Implications for physicians • Low adherence to hydroxychloroquine therapy in SLE is widespread among Medicaid recipients. • Patients with SLE in predominantly low-income, African American communities are at higher risk for non-compliance to hydroxychloroquine therapy. • Lack of access to health care providers and hospitals reduces the likelihood that patients with lupus will adhere to therapy. • Physicians should make every effort to identify barriers to care and treatment adherence, especially in low-income patients with lupus who live in isolated communities with large minority populations. References: American College of Rheumatology Press Release. “Diversity Rate and Poor Access to Health Professionals May Influence Lupus Therapy Adherence.” November 4, 2017. ACR/ARHP Annual Meeting. San Diego, California.
  6. An evidence-based approach to pre-pregnancy counselling for patients with systemic lupus Y K Onno Teng Edwin O W Bredewold Ton J Rabelink Tom W J HuizingaH C Jeroen Eikenboom Maarten Limper Ruth D E Fritsch-StorkKitty W M Bloemenkamp Marieke Sueters Rheumatology, kex374, https://doi.org/10.1093/rheumatology/kex374 Published: 20 November 2017 Abstract Patients with SLE are often young females of childbearing age and a pregnancy wish in this patient group is common. However, SLE patients are at high risk for adverse pregnancy outcomes that require adequate guidance. It is widely acknowledged that pre-pregnancy counselling is the pivotal first step in the management of SLE patients with a wish to become pregnant. Next, management of these patients is usually multidisciplinary and often requires specific expertise from the different physicians involved. Very recently a EULAR recommendation was published emphasizing the need for adequate preconception counselling and risk stratification. Therefore the present review specifically addresses the issue of pre-pregnancy counselling for SLE patients with an evidence-based approach. The review summarizes data retrieved from recently published, high-quality cohort studies that have contributed to a better understanding and estimation of pregnancy-related risks for SLE patients. The present review categorizes risks from a patient-oriented point of view, that is, the influence of pregnancy on SLE, of SLE on pregnancy, of SLE on the foetus/neonate and of SLE-related medication. Lastly, pre-pregnancy counselling of SLE patients with additional secondary APS is reviewed. Collectively these data can guide clinicians to formulate appropriate preventive strategies and patient-tailored monitoring plans during pre-pregnancy counselling of SLE patients. https://academic.oup.com/rheumatology/advance-article-abstract/doi/10.1093/rheumatology/kex374/4641853?redirectedFrom=fulltext
  7. 21 November, 2017 SAN DIEGO — At the American College of Rheumatology Annual Meeting, Joan Merrill, MD, spoke about a study that she said is further demonstration that atacicept should continue being developed as a potential treatment for lupus. According to Merrill, the results also suggest that measurements of low-disease activity may represent not just clinically meaningful endpoints, but may also “work as endpoints in clinical trials to discriminate drug from placebo.” https://www.healio.com/rheumatology/lupus/news/online/{1b289264-6a9b-47a3-86c6-9b0eb8a3980f}/video-atacicept-is-a-potential-exciting-treatment-for-lupus?utm_source=selligent&utm_medium=email&utm_campaign=rheumatology news&m_bt=1879111151405
  8. Obesity linked to worse outcomes of pain, fatigue, depression in women with lupus November 13, 2017 SAN DIEGO — Among women with systemic lupus erythematosus, obesity appears to be independently linked to worse patient-reported outcomes, suggesting that weight loss may improve outcomes for this population, according to findings presented at the American College of Rheumatology Annual Meeting. “The research that I am presenting at this conference was inspired by previous work that showed that patients with lupus experienced big deferments in patient-reported outcomes, or PROs,” Sarah L. Patterson, MD, a fellow in rheumatology at the University of California, San Francisco, and an author of the study, said in her presentation. “It's also been noted that these deferments in PROs are not fully explained by the severity of their lupus disease or by sociodemographic factors such as poverty. So, we therefore wanted to know whether body composition and, specifically, excess adipose tissue contributes to the worse health-related quality of life and greater symptom burden that we see in this particular patient population.” In the study, Patterson and colleagues identified a sample of 148 patients with SLE (65% white, 14% Asian and 13% African-American; mean age, 48 ± 12.3 years) from the Arthritis Body Composition and Disability (ABCD) study. Eligible participants were women aged at least 18 years who had a diagnosis of SLE that could be corroborated by medical record review. The researchers calculated BMI and fat mass index (FMI). FMI measures total fat mass adjusted for height and was evaluated in the study using whole dual-energy X-ray absorptiometry. Obesity was defined using two designations: FMI of at least 13 kg/m2 and BMI of at least 30 kg/m2. The following four validated patient-reported outcomes were included as dependent variables: disease activity via Systemic Lupus Activity Questionnaire, depressive symptoms via Center for Epidemiologic Studies Depression Scale, pain assessed by SF-36 pain subscale and fatigue measured by SF-36 vitality subscale. Multivariable linear regression was used to analyze correlations of obesity with patient-reported outcomes , adjusted for possible confounding factor (age, race, education, income, smoking status, disease duration, disease damage and prednisone use). Adjusted means for each outcome were then calculated based on the multivariable regression. Of the patients in the sample, 17% had poverty-level income; 86% had education beyond high school; the mean duration of disease was 16 ± 9 years; and 45% were being treated with glucocorticoids. Based on the FMI definition of obesity, 32% of patients met the criteria for obesity, whereas 30% were deemed obese by the BMI definition. The multivariate regression model found that FMI-defined obesity was correlated with worse scores on each patient-reported outcome (greater disease activity, higher levels of depression, more pain and more fatigue). In the analyses that used the traditional BMI of at least 30 kg/m2 criteria, the same correlations were seen between obesity and each of the patient-reported outcomes. “These findings have important clinical implications. The PROs that we measured, particularly pain and fatigue, are known to have profound effects on quality of life, and remain a major area of unmet need in people with lupus,” Patterson said. “In other words, there are many patients with lupus who are treated with aggressive immunomodulatory therapy and these symptoms of pain and fatigue persist. The relationship that we observed between excess fat and worse outcomes really underscores the need for lifestyle interventions for lupus patients who are overweight.” – by Jennifer Byrne Reference: Patterson SL, et al. Abstract #2263. Presented at: American College of Rheumatology Annual Meeting; Nov. 4-8, 2017; San Diego. Disclosures: The authors report no relevant financial disclosures. https://www.healio.com/rheumatology/lupus/news/online/{88b88835-9c84-4880-a058-1e4d1d926aa6}/obesity-linked-to-worse-outcomes-of-pain-fatigue-depression-in-women-with-lupus?utm_source=selligent&utm_medium=email&utm_campaign=rheumatology news&m_bt=1879111151405
  9. Managing Infections for Lupus Patients - Highlights from Dr. Curran's Presentation On August 9, 2012, the LSI hosted an educational teleconference “Managing and Preventing Infections for Lupus Patients” presented by Dr. James Curran. The event included a presentation by Dr. Curran followed by Q&A from the callers. The article below is based on information obtained from the teleconference. The entire transcript will be available online in the next few weeks. The second leading cause of death in SLE is infection – making managing and preventing infections a top priority for lupus patients. Lupus patients are at greater risk for many reasons; most are on immunosuppressive therapy at one point or another, pathogen exposure at office visits and lupus itself causes a dysfunction of the normal immune response to name a few. Treatments may also contribute to the high infection rate. The new biologic medications (rituximab, orencia and Benlysta) can increase the risk of infection. Corticosteroids, including prednisone, increase the risk of infection. The higher the dose of corticosteroids you’re on, the longer you’re on the dose, the greater the risk of infection. The incidence of infections in lupus patients – especially life-threatening infections – appears to be highest in the first five years of the disease. One reason for this might be that in the first five years, patients are undergoing treatment that is modifying their immune response. Infections lupus patients should be mindful of include bacterial, viral and fungal. Some common threats to lupus are pneumococcal pneumonia or streptococcus pneumonia, Haemophilus influenza and staphylococcus aureus. Lupus patients have a predilection towards salmonella which in lupus patients frequently causes osteomyelitis or bone infections. Shingles is more common in lupus patients than the general public. Yeast infections are also common in lupus patients. Other non-hospitalized infections include respiratory tract infection, sinusitis, urinary tract infections and skin infections. Usually with aggressive treatment and early diagnosis, these infections do not require hospitalization. What can you do to protect yourself again getting an infection? First, non-live vaccines are recommended. That would include the flu shot (NOT the flu vaccine administered through the nasal passages), Pneumococcal vaccine every 5-10 years, a Bordetella pertussis booster, Hepatitis B (for healthcare workers) and meningococcal to name a few. If you are on a biologic, be aware that the biologic medicine may impair the normal response to a vaccine. If you have lupus, you should be vaccinated before you use any biologic and before taking major immunosuppressant medications. Plaquenil, hydroxychloroquine, decreases the risk of infections. A 2009 study showed that individuals on Plaquenil are 16 times less likely to get a major infection when taking the drug – regardless of whether or not corticosteroids are also taken. So, patients on corticosteroids and Plaquenil had fewer infections than patients on steroids alone. Other things you can do to manage infections are to be sure to get treated with antibiotics if you are sick. Be sure to use bactericidal drugs – drugs that kill the bacteria instead of freeze it. Lupus patient’s immune system needs to kill the bacteria. In conclusion, remember vaccinations are very important – avoid live viruses. Plaquenil reduces risk of infection. Limit your exposure to infection.
  10. Lupus Survival Much Improved, But Plateaued September 25, 2017 | Lupus By Gregory M. Weiss, M.D. Survival rates for patients with systemic lupus erythematosus have plateaued since the middle of the 1990s after a period of major improvement starting in the 1950s. It has been thought that survival in systemic lupus erythematosus has continued to improve over the years, with reports of survival in adults increasing from 50% in the 1950s to more than 95% in the 1990s. Data with regard to survival trends in low- and middle-income countries and at 10- and 15-year periods are limited, so Maria Tektonidou and fellow researchers in Greece sought to describe mortality trends for children and adults with systemic lupus erythematosus and presented their findings in a recent Annals of the Rheumatic Diseases article. The study The authors performed a systematic review of the literature, looking at children and adults with systemic lupus erythematosus. Ultimately included in the final analysis were 171 studies; 125 looked at adult survival rates, 51 at pediatric survival, and 5 at both. Results • Studies in high-income countries showed a steady increase in survival from the middle of the 1950s to 1990. Survival rates have remained stable since then. • Five-year survival in high-income countries is greater than 95% in both adults and children who have systemic lupus erythematosus. • Five- and 10 year survival was lower for children than adults in low- to middle-income countries. Adults • Survival in adults with systemic lupus erythematosus has not continued to improve through the 2000s. • From 2008 to 2016, survival rates for adults with systemic lupus erythematosus in high-income countries at 5, 10, and 15 years were 0.95, 0.89, and 0.82, respectively (95% confidence intervals [CIs], 0.94-0.96, 0.88-0.90, and 0.81-0.83, respectively). • From 2008 to 2016, survival rates for adults with systemic lupus erythematosus in low- to middle-income countries at 5, 10, and 15 years were 0.92, 0.85, and 0.79, respectively (95% CIs, 0.91-0.93, 0.84-0.87, and 0.78-0.81, respectively). Children • From 2008 to 2016, survival rates for children with systemic lupus erythematosus in high-income countries at 5 and 10 years were 0.99 and 0.97, respectively (95% CIs, 0.98-1.0 and 0.96-0.98, respectively). • From 1980 to 2000, survival rates for children with systemic lupus erythematosus in low- to middle-income countries at 5 and 10 years were 0.85 and 0.79, respectively (95% CIs, 0.83-0.88 and 0.76-0.82, respectively). • Listing of systemic lupus erythematosus as the cause of death in all cohorts decreased over time. Implications for physicians • Although survival in adults and children with systemic lupus erythematosus both in high-income and in low/middle-income countries has improved dramatically since the 1950s, further gains have not been realized in the 2000s. • A decreased frequency of deaths attributed to systemic lupus erythematosus may be the result of new immunosuppressive drugs and combination therapies. • No increase in death resulting from cardiovascular events or cancer was seen in adults with systemic lupus erythematosus. • The authors suggested that strides need to be made in determining why survival rates are lower in children than in adults in low- and middle-income countries. http://www.rheumatologynetwork.com/lupus/lupus-survival-much-improved-plateaued?GUID=&rememberme=1&ts=26092017
  11. Jewish New Year fruit may hold seeds of hope for brain disease sufferers Israeli neurologist, nanotech expert make pomegranate oil capsules that send antioxidants where they can have the most effect By SHOSHANNA SOLOMON September 18, 2017, 4:36 pm Pomegranates at the Mahane Yehuda market in Jerusalem on August 25, 2016. (Nati Shohat/Flash90) As Jewish families across the world reach for the pomegranate that they customarily eat on Rosh Hashanah, they may not realize that the fruit, with its juicy red seeds and crown-like crest, could hold a key to graceful aging. King Solomon is said to have designed his crown based on that of the pomegranate, and the image of the fruit often appears on ancient coins of Judea. The pomegranate is said to have 613 seeds, which correspond with the 613 Jewish precepts or commandments set out by the Torah regulating the Jewish way of life. For this reason, and because it represents fruitfulness, knowledge, learning and wisdom, and is seasonal in Israel, it customarily appears on Jewish New Year dinner tables. The association of the pomegranate with knowledge, learning and wisdom may not be far from the truth. Pomegranate seed oil (PSO) contains high concentrations of punicic acid, or omega 5 as it is also called, which is believed to be one of the most powerful antioxidants in nature. “Oxidation of proteins and lipids play an important role in aging and neuro degeneration in the brain in general,” said Prof. Ruth Gabizon, a researcher of degenerative brain diseases at the Neurology Department of Hadassah University Hospital in Jerusalem. “Brain cells die over time, from when we are teenagers, and they are not replaced.” Prof. Ruth Gabizon, a researcher of degenerative brain diseases at the Neurology Department of Hadassah University Hospital in Jerusalem (Courtesy) Common daily activities, such as digesting food and breathing, create free radicals that result in oxidation and damage to human cells, in particular to brain cells. Unlike blood or skin cells, brain cells do not get replaced by new ones. So free radicals are harmful to our health and end up impairing our thinking, memory, orientation and alertness, among others. Degenerative brain disease and brain atrophy are typical of debilitating illnesses such as Alzheimer’s, Parkinson’s, and Creutzfeldt-Jakob disease in which brain cells are destroyed, followed by rapid functional and behavioral deterioration and eventual death. The number of people worldwide living with dementia, for example, is expected to almost double every 20 years, reaching 75 million in 2010 and 131.5 million in 20150, according to Alzheimers’ Disease International. Fighting fire with food Aging and brain degeneration are a natural and unavoidable process, explained Gabizon, but they can be accelerated or slowed down depending on our lifestyles. Antioxidants are known for their ability to protect against the destruction of brain and body cells. They can be found in foods such as cranberries, blueberries, beans, artichokes, pecans and foods containing Vitamin E. GranaGard is a food supplement that contains pomegranate seed oil (Courtesy Efrat Eshel) “If we are able to control the levels of free radicals, maybe our cells will work better and live longer,” Gabizon said. “Our approach is that even if we cannot cure the severely affected patients with diseases such as Alzheimer’s, since they are diagnosed at a stage when large numbers of brain cells are already dead, perhaps we can delay the disease’s advance at early stages or even prevent disease outbreak in healthy people at risk of developing neurodegeneration, which is actually most of us. “This, by extending the life span of brain cells, and improving their functioning even under dire conditions in which the body is filled with ‘biological garbage’ like the destructive oxidizing free radicals.” Antioxidants, as they are present in many vegetables and fruits, may in principle protect against the destruction of brain and body cells. And this is the case for pomegranate seed oil. Unfortunately, antioxidants that we consume through food and supplements do not always have the desired impact because they are consumed in too low of a concentration or broken down in the digestive system, and thus never make it to the brain or other cells. The challenge, said Gabizon, is to make sure the pomegranate oil that we eat, which generally is filtered out by the liver, gets to the parts of our body which can benefit from it. So Gabizon teamed up with Prof. Shlomo Magdassi — an expert in the field of nanotechnology from the Casali Institute for Applied Chemistry at the Hebrew University of Jerusalem — and together devised a way to break down the oil into tiny particles that can slip through the liver undetected and make their way to the brain. The product they have developed, called GranaGard, has a high concentration of antioxidants that have a good chance of reaching the brain. Prof. Shlomo Magdassi of the Institute of Chemistry at the Faculty of Science, February 02, 2012. (Nati Shohat/Flash90) A study of GranaGard performed by Gabizon and Magdassi found that consumption by lab mice with multiple sclerosis delayed the spread of the disease and considerably reduced its intensity. An additional experiment with lab mice who suffered from Creutzfeldt-Jakob showed that the use of GranaGard “considerably delayed the spread of the disease and lowered the intensity of the accompanying degenerative-dementing processes,” Gabizon said. The two studies were published in the international Journal of Nanomedicine in November 2015 and in the International Journal of Nanomedicine in 2014. Gabizon and Magdassi patented the product and formed the firm Granalix Biotechnologies Ltd. They are now hoping to undertake clinical trials to test the effect of their formulation in humans with Creutzfeldt-Jakob, Alzheimer’s and multiple sclerosis, Gabizon said. GranaGard is already on sale as a dietary supplement at www.granalix.com and is being used by patients with degenerative brain diseases, their family members and others, Gabizon said. The recommended dose is two capsules with breakfast. Seeds of hope M is a Jerusalem-based 50-year old medical professional who was diagnosed a year and a half ago with brain atrophy. He has been using GranaGard for a year and three months, after a friend recommended the supplement and after he met with Gabizon to find out more about it. “One of the ways to deal with atrophy is via fighting free radicals,” M said, preferring not to make his identity known. Since his diagnosis, he has started an antioxidant diet, which includes taking GranaGard and his regular medications along with exercise. Since his diagnosis, he said, there has been no deterioration in his condition. He would “absolutely” recommend taking the supplement, M said. “I cannot substantially say this (GranaGard) absolutely benefited me, but I have incorporated it as an important piece of my regime. The end result is that I am still functioning.” Prof. Tamir Ben-Hur, the chairman of the Department of Neurology at the Hadassah Medical Center, knows the supplement and also knows Gabizon, but has no stake in the firm or the technology, he said. “Oxidation is one of the important mechanisms of tissue injury in many diseases, including neurodegenerative diseases like Alzheimer’s,” he said in a phone interview. “To use antioxidants to stall the process has been around for a while but efforts have generally failed, because either the anti-oxidants were too weak or the active ingredient did not reach the brain.” The concept behind GranaGard is not new, he said, but the way it is used makes it more powerful than other antioxidants available, such as Vitamin E. Products that consumers find in health stores – either creams or products to be taken orally — are sometimes inconsistent in their dosages and don’t get effectively absorbed. “These capsules help the formulation surpass the liver, and this is the true advantage of this product versus other products in the stores.” “There is no clinical proof that GranaGard can slow down Alzheimer’s, and I hope a clinical trial will prove that. But there is good biological research data that it is well absorbed by the gut, reaches the brain and has an antioxidant effect on the brain. We believe it may work with humans but we need to prove it,” he said. Elderly men play backgammon at a country club in northern Tel Aviv, illustrative (Tomer Neuberg/Flash90) “I would certainly recommend it to people who are aging and prone to degenerative diseases,” he added. “When you have a pre-Alzheimer’s condition there is nothing to prevent the disease from developing and nothing to stop it. There is no clinical proof of efficacy, but I suggest people take it, because there is good biological rationale, and good data in animals, so why not?” Gabizon is cautious about raising hopes of patients who are suffering from these debilitating afflictions. At the moment, the only product her company has on the market is an over-the-counter food supplement. Most likely, to actually defeat these illnesses, a cocktail of various compounds will have to be developed, she said. But each step forward is a victory, she added. Their component has shown a way antioxidants can be broken down to go undetected by the liver and has shown a “definite effect” on the pathology of mice. “We have not yet proven the formulation’s effect on the human brain,” she said, “But the effect on mice has been proven and we hope to show the same effect with humans during the clinical trials. Even if we don’t find a cure for these diseases, if we are able to delay the degeneration process by a few years, we have done our job.” https://www.timesofisrael.com/jewish-new-year-fruit-may-hold-key-to-graceful-ageing/?utm_source=dlvr.it&utm_medium=twitter
  12. Women with Lupus Overwhelmingly Have Healthy Pregnancies By Whitney L. Jackson In contradiction to long-standing beliefs, a healthy pregnancy is possible for women who have lupus, says Jill Buyon, M.D., a rheumatologist and lupus specialist from New York University School of Medicine. “Patients with lupus have been under the impression that pregnancy would be a very dangerous thing for them. From the mother’s perspective, the concerns are: Will the mother sustain a lupus flare? For mothers who have once had kidney involvement: How safe is it to get pregnant? Will there be adverse pregnancy outcomes? Will the baby be very small? Will the baby be born so early that it needs to be in the hospital for a long time. And, of course, the scary question is: Will my baby die? These are the outcomes we look at from the perspective of counseling and what we wanted to learn from this study,” she said. Dr. Buyon recently published research in the Annals of Internal Medicine showing that women with relatively inactive lupus without serious flares experienced a normal pregnancy with a positive outcome. Study participants were women, ages 18-to-45, enrolled in the Predictors of Pregnancy Outcome: Biomarker in Antiphospholipid Antibody Syndrome and Systemic Lupus Erythematosus (PROMISSE) Trial. The investigation was multi-center, multi-racial and multi-ethnic. Out of the 385 women followed during the study, 81 percent experienced no adverse events. Overall, 9 percent of pregnancies resulted in premature birth, 4 percent experienced pregnancy loss during the second or third trimester, 1 percent encountered infant death due to pregnancy complications, and 10 percent had very low birth weight. Throughout the study, investigators identified four factors that appeared to increase a woman's likelihood for a negative outcome — high blood pressure during pregnancy, more active lupus during gestation, low platelet count, and a positive lupus anticoagulant test during the first trimester. “The patients who tended to be more sick at the outset, tended to be those who might have an adverse pregnancy outcome. The highest risk factor is the presence of something called a lupus anticoagulant. The presence of this abnormal blood test is very important and one that absolutely all doctors should test for,” Dr. Buyon said. In addition, race and ethnicity — black, Hispanic and Asian — contributed to poor outcomes and was in and of itself, a risk factor. Dr. Buyon said she doubts it is due to socioeconomic factors because the patients were treated by similar doctors in tertiary care centers. She suspects it may be due to genetics, which needs to be explored. Although the findings point to the possibility of healthy pregnancies for this population, Dr. Buyon cautioned women who have high protein levels in urine due to uncontrolled kidney disease could still face significant problems with pregnancy. These women are typically advised to postpone pregnancy until their kidney disease improves. Ten to 15 percent of patients had a moderate flare requiring minimal medication changes, but less than 5 percent of patients had a flare that required high dose steroids or hospitalization. About one in five patients had a renal flare. “The other optimistic perspective was that 225 patients never had kidney disease, but many of them had anti DNA antibodies which is an antibody we worry about in developing renal disease. Only four people developed de novo renal disease. For people who had previous kidney disease ... but were in complete remission, they too had very few renal flares. I think this is very encouraging news for women with past renal disease who really are so worried that maybe they’ll never have a healthy pregnancy, that simply is not true (14:01),” Dr. Buyon said. The hope, she said, is that these findings can be used to inform discussions between doctors and their patients with lupus who are also interested in pursuing pregnancy. Dr. Buyon discusses the study, its findings and implications in the following video with Rheumatology Network. REFERENCES Jill P. Buyon, MD; Mimi Y. Kim, ScD; Marta M. Guerra, MS, et al. "Predictors of Pregnancy Outcomes in Patients With Lupus: A Cohort Study," Annals of Internal Medicine, Aug. 4, 2015. DOI: 10.7326/M14-2235 http://www.rheumatologynetwork.com/lupus/women-lupus-overwhelmingly-have-healthy-pregnancies?GUID=&rememberme=1&ts=12092017
  13. Selena Gomez

    Selena Gomez reveals kidney transplant, best friend was donor FROM THE TOPICENTERTAINMENT 14/09/17 Selena Gomez has revealed that she had a kidney transplant operation this summer linked to her lupus. In an Instagram post, the singer says that her friend Francia Raisa donated an organ to her and says she wanted to explain why fans hadn't heard much from her despite having new music out. "So I found out I needed to get a kidney transplant due to my Lupus and was recovering," she writes. "It was what I needed to do for my overall health." Image captionSelena Gomez has also posted photos of her scar from the kidney transplant operation Selena Gomez also thanked her friend, The Secret Life of the American Teenager actress Francia Raisa, in her Instagram post. Morerelated stories Selena Gomez: Social media isn't real life When celebrities go out in disguise Selena Gomez had lupus but what is it? "There aren't words to describe how I can possibly thank my beautiful friend Francia Raisa," she writes. "She gave me the ultimate gift and sacrifice by donating her kidney to me. I am incredibly blessed. I love you so much sis." Image captionSelena Gomez helped her friend Francia Raisa out in 2014 at the Annual Unlikely Heroes awards in LA, which she was hosting Selena Gomez released the first single from her new untitled album, It Ain't Me featuring Kygo, in March. Since then Bad Liar and Fetish have come out but she hasn't been out promoting the tracks because of her operation. Her first public appearance after recovering from the surgery was in New York with boyfriend The Weeknd last Friday night. She also took time off social media last year to deal with panic attacks, anxiety and depression. The 25-year-old says her ongoing mental health problems are a side-effect of her lupus diagnosis last year. Image captionSelena Gomez appeared in Radio 1's Live Lounge in 2015 to promote her album, Revival Lupus affects the body's immune system. The symptoms of the disease include extreme tiredness, rashes (especially on the face, wrists and hands), joint pain and swelling. In her post, she says not enough is known about the condition. "Lupus continues to be very misunderstood but progress is being made." Find us on Instagram at BBCNewsbeat and follow us on Snapchat, search for bbc_newsbeat http://www.bbc.co.uk/newsbeat/article/41268256/selena-gomez-reveals-kidney-transplant-best-friend-was-donor
  14. 6 of the Best Apps for Chronic Illness Management JULY 17, 2017 BY WENDY HENDERSON IN SOCIAL CLIPS. Click Here to receive Lupus News via e-mail Managing a chronic illness can be difficult. There are many different medications to take (often at different times), appointments to remember, symptoms to keep track of, and lots of information to absorb. Thankfully, living in a digital age means that there are numerous mobile apps that can help you manage your chronic illness. We’ve put together a list of some of the best mobile apps for managing your chronic illness: Medisafe is an app that helps patients manage medications. It helps with dosage and reminds you when you need to take your meds, increasing adherence rates. The information can also be shared with your healthcare team and pharmacy. Pain Diary works for anyone with a chronic illness. It allows patients to chart and score pain as well as record and track other symptoms of the disease such as fatigue and mood swings. This app also has a feature where patients can connect with others living with the same chronic illness and swap best practices. ZocDoc is a handy app if you’ve recently been diagnosed with a chronic illness, since one of the first things you’ll need to do is find a doctor to treat you. ZocDoc allows you to search for local specialist doctors who are approved by your insurance company. The app will even tell you when the doctor is available to see you. MORE: Nine important facts about lupus you may not know. My Medical Info is an app that stores all your relevant health history and insurance details. This makes filling out those endless forms a little less challenging, since you won’t have to rely on your memory for all the details. The app will also allow you to program in doctors’ appointments and all the medications you’re taking. Fooducate helps you keep track of your diet and make healthy choices. Eating well is an integral part of managing any chronic illness and this app will help you to eat the right foods and get you to a healthy body weight. You can program in how many calories you want to consume a day and then add in the food choices you make, the app will work out the nutritional values of everything you eat and tell you how many calories you’ve consumed. It also works in conjunction with many fitness apps to add in details of any physical activities and calories burned. Sleep Cycle helps you get the best out of your sleep. The app analyzes how much sleep and the quality of sleep you get each night and you can also have the alarm set to wake you when you’re in your lightest sleep, leaving you feeling less groggy and more refreshed each day. MORE: Nine tips to help you live better with lupus. Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. https://lupusnewstoday.com/2017/07/17/6-best-apps-chronic-illness-management/?utm_source=LUP+NEws+E-mail+List --
  15. Benlysta Formulation for Lupus Gets FDA Nod August 01, 2017 | Lupus By Rheumatology Network Staff A new subcutaneous formulation of Benlysta (belimumab) has received FDA approval for the treatment of adult patients with active, autoantibody-positive systemic lupus erythematosus (SLE) who are receiving standard therapy, GSK announced. This is the first subcutaneous self-injection treatment option for patients with SLE, according to GSK. Patients will be able to administer the medicine as a once-weekly injection of 200 mg, from a single-dose prefilled syringe or a single-dose autoinjector, after receiving training from their health care provider. This is the second formulation of Benlysta to be granted FDA approval for SLE, GSK noted. The intravenous formulation, approved in 2011, is administered to patients as a weight-based dose of 10 mg/kg, via a 1-hour infusion in a hospital or clinic setting every 4 weeks (after an initial loading phase given on days 0, 14, and 28). “Lupus can impact the lives of patients in many different ways with varied and often unpredictable symptoms,” said Vlad Hogenhuis, GSK’s Senior Vice President, Head of Specialty Care. “Since it launched in its IV form, thousands of patients worldwide have received treatment with Benlysta. The approval of the new injectable formulation will now provide an additional choice for patients, allowing them to self-administer their medicine at home rather than going to hospitals or clinics for their infusions.” The approval is based on data from the BLISS-SC phase III pivotal study of more than 800 patients with active SLE. The study measured reduction in disease activity at Week 52 in patients receiving belimumab plus standard of care versus those receiving placebo plus standard of care (assessed by the SLE Responder Index). The Benlysta subcutaneous formulation will be available in specialty pharmacies in the United States in late August. Further regulatory submissions for the subcutaneous formulation of Benlysta are under review or planned in other countries during the course of 2017.
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