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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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      Sign Up & Date of Birth   08/26/2017

      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 “/“.                                                
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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. 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.
  2. Cumulative hydroxychloroquine and aspirin may prevent cardiovascular events in patients with SLE https://www.healio.com/rheumatology/lupus/news/online/{f8a80a3a-3122-457d-ae5e-b2f34606cc5d}/cumulative-hydroxychloroquine-and-aspirin-may-prevent-cardiovascular-events-in-patients-with-sle?utm_source=selligent&utm_medium=email&utm_campaign=rheumatology news&m_bt=1879111151405 Fasano S. Et al. J Rheumatol. 2017;doi:https://doi.org/10.3899/jrheum.161351. July 14, 2017 In patients with lupus, ongoing use of hydroxychloroquine plus low-dose aspirin may be associated with increased effectiveness in the primary prevention of cardiovascular events, according to recently published findings. Researchers identified 189 patients from a database of the Rheumatology Unit of the Second University of Naples. The study group included 175 women and the overall mean age at baseline was 31 years. Patients had a diagnosis of systemic lupus erythematosus (SLE) upon admission, and had never experienced a cardiovascular event (CVE). Patients were seen for follow-up every 3 months to 6 months, depending upon their clinical condition. Investigators documented any CVE that occurred during the intervening time and information about the use of aspirin (ASA) and cumulative dosages of hydroxychloroquine (c-HCQ). Researchers used Kaplan-Meier analysis to determine the cumulative dosage that yielded a lower rate of CVE. Cox regression analysis was used to determine factors linked to an initial CVE. They found 10 patients experienced the following non-lethal thrombotic events: stroke, one patient; transient ischemic attack, five patients; and acute myocardial infarction, four patients. The mean time to the first CVE was 5 years. Four (2.1%) patients died during the course of the study; none of these deaths were related to CV complications. Kaplan-Meier analysis demonstrated a significant disparity in CVE-free rates among the four patient subgroups. There was no difference in CVE-free rate between the 135 patients treated with ASA plus HCA and the 28 patients treated with aspirin monotherapy. A lower rate of CVEs was reported in the c-HCQ patients. A higher CVE-free rate was documented in the 85 patients on an ASA-HCA regimen who had arrived at a cHCQ dosage greater than 600 g than in the 28 patients who were treated with ASA monotherapy or the 51 patients treated with ASA/cHCQ at a dosage less than 600g. There were no differences in traditional CV risk factors and those specific to SLE among the patient groups, nor were there differences between medications (statins, high-dose steroids). Multivariate analysis revealed that cumulative treatment with hydroxychloroquine, when added to ASA, was thromboprotective. High blood pressure and antiphospholipid antibody positivity were identified as predictive of an initial CVE. Serena Fasano “Systemic lupus erythematosus is associated with an increased risk of cardiovascular disease. This study was performed to investigate the role of aspirin and distinct hydroxychloroquine cumulative dosages and treatment durations,” researcher Serena Fasano told Healio/Rheumatology. “We found that aspirin and antimalarials, when administered for more than 5 years at a cumulative dosage greater than 600 g, may reduce the CVE risk in SLE patients.” – by Jennifer Byrne Disclosure: The researchers report no relevant disclosures.
  3. Longterm hydroxychloroquine therapy may reduce cardiovascular events in SLE June 16, 2017 MADRID — Long-term use of hydroxychloroquine was associated with reduced cardiovascular risks in a cohort of patients with systemic lupus erythematosus,according to findings presented at the EULAR Annual Congress. “[Systemic lupus erythematosus] SLE may be considered a coronary heart disease condition,” Serena Fasano, MD, of the Rheumatology Unit at the University of Campania Luigi Vanvitelli in Naples, said. “Patients should be investigated for traditional and SLE-related risk factors. SLE patients are candidates for aspirin prophylaxis and long-term hydroxychloroquine. Statins are recommended for patients with persistently high LDL cholesterol levels.” The aim of the study was to assess the role of aspirin, hydroxychloroquine and statins as primary prophylaxis of cardiovascular events in SLE. The study included clinical chart reviews of 291 patients with 8 years of follow-up. “The primary outcome was the first cardiovascular event,” Fasano said. Results showed 16 events in that time. There were seven myocardial infarctions and two strokes in the group. The event-free rate was higher in the 120 patients treated with low-dose aspirin (hazard ratio = 0.27) and hydroxychloroquine for more than 5 years (HR = 0.26) than in 98 patients who were treated with aspirin alone or hydroxychloroquine for fewer than 5 years. “Low-dose aspirin and hydroxychloroquine were negative predictors of events,” Fasano said. No such association was reported for statins. Smoking, obesity, hypertriglyceridemia, diabetes mellitus, disease activity, severe SLE, or use of immunosuppressive agents or steroids failed to demonstrate any kind of association with cardiovascular events, according to Fasano. Multivariable analysis results showed the associations between low-dose aspirin (HR = 0.24) or hydroxychloroquine use for longer than 5 years (HR = 0.27) and reduced incidence of cardiovascular events persisted. — by Rob Volansky Reference: Fasano S, et al. Abstract #OP0233. Presented at: EULAR Annual Congress; June 14-17, 2017; Madrid. Disclosure: The researchers report no relevant financial disclosures. Measure Measure
  4. Furie discusses SLE pathogenesis April 27, 2016 CHICAGO — At the American College of Rheumatology State-of-the-Art Clinical Symposium, Richard A. Furie, MD, compared the number of “wins” in research into treatments for systemic lupus erythematosus to a losing season for a baseball team. “But, we have had some highlights,” Furie, an investigator at The Feinstein Institute for Medical Research and chief of the Division of Rheumatology at Northwell Health, said. “I think the introduction of mycophenolate mofetil has been great. It has now become pretty much the standard of care for patients with lupus nephritis.” Furie presented a review of data that showed an improvement in response rates with mycophenolate mofetil compared with cyclophosphamide or azathioprine in studies that re-randomized patients to different treatments after showing a response to the first-line treatment. The approval of belimumab was important for patients with systemic lupus erythematosus (SLE), but Furie added resurgence in the use of hydroxychloroquine has improved survival and is effective for many SLE patients with rash or arthritis. In addition, the medication reduces lipid levels and promotes strong bones. “The dogma is now that every lupus patient should be on hydroxychloroquine,” Furie said. However, he argued, “We are not doing a good job if you look at data.” Response rates to new treatments, which include background therapy with corticosteroids, are often 50% or lower, according to Furie. “We are down in the single digits for the abatacept studies,” Furie said. “So we have major unmet needs. I think the biggest need is for lupus nephritis. For those with severe renal disease, we need better drugs. We need safer drugs. We need more efficacious drugs.” Organ damage prevention is key, he said, whether the damage is related to disease progression or side effects of the medication. The pathogenesis of SLE, according to Furie, “starts with a genetically susceptive host, and there has to be an environmental trigger.” For some patients, the environmental trigger may be the sun, according to Furie, which can cause apoptosis of skin cells, the release of RNA and DNA, and activation of toll-like receptor-9 and RNA toll-like receptor-7. “The consequence of toll-like receptor signaling is the elaboration of a variety of cytokines, chief of which is interferon-alpha,” he said. The activation of T cells is a function of the adaptive immune cells involved in SLE, and interactions between B cells and T cells may be responsible for disease activity, according to Furie, and these have been, and will continue to be, targets for treatments of SLE. Reference: Furie RA. Recent advances in SLE treatment. Presented at: American College of Rheumatology State-of-the-Art Clinical Symposium; April 9-10, 2016; Chicago. Disclosures: Furie reports relationships with Pfizer, Amgen, Anthera, Biogenldec, BMS, BoehringerIngelheim, Celgene, Dynavax, Eli Lilly, Exagen, Genetech/Roche, GlaxoSmithKline, Medimmune, Novartis, Pfizer, Mallinckrodt Pharmaceuticals, Sanofi, Takeda, UCB, Abbvie, Alnylam, Biogenldec, BMS, BoehringerIngelheim , Celgene, Chugai, Eli Lilly, Estrela (Janssen), Exagen, Genetech/Roche, GlaxoSmithKline, Medimmune, Pfizer, Onyx, Mallinckrodt Pharmaceuticals, Regeneron, Sanofi, Takeda, UCB, Lupus Foundation of America, Lupus Alliance of America, SLE Foundation, Alliance for Lupus Research and The Lupus Academy.
  5. Pregnant women with aPL antibodies may benefit from hydroxychloroquine Sciascia S, et al. Am J Ob Gyn.2015;doi:10.1016/J.ajog.2015.09.078. October 15, 2015Women with antiphospholipid syndrome or positive antiphospholipid antibodies who became pregnant while receiving hydroxychloroquine for at least 6 months were more likely to have positive pregnancy outcomes compared with patients who did not receive hydroxychloroquine, according to analysis of recently published data. An observational, retrospective, single-center study of 170 pregnancies in 96 women with antiphospholipid antibodies (aPL) was conducted at a tertiary referral center. All women had positive aPL levels conformed at least 12 weeks apart prior to the index pregnancy. Investigators collected clinical and serological data, including demographics, disease and pregnancy characteristics, the presence of systemic lupus erythematosus (SLE) or other comorbidities, risk factors for cardiovascular disease and autoantibody status. They also noted all medications, including aspirin and low-molecular-weight heparin (LMWH). From January 2008 to July 2015, 31 women who received hydroxychloroquine for at least 6 months (group A) experienced 51 pregnancies. Of these women, 64.5% had SLE and 32.2% had primary antiphospholipid syndrome (APS). In 26 pregnancies, women received 200 mg hydroxychloroquine twice a day. In 25 pregnancies, mothers took 200 mg hydroxychloroquine once a day. Hydroxychloroquine was the only treatment aside from aspirin or LMWH received by 30 patients. Seven women were primigravida and 24 were multiparous. A second group of 65 patients with aPL experienced 119 pregnancies and did not receive hydroxychloroquine (group B). In this group, 7.7% of patients had SLE, 69.2% of patients had primary APS and 23.1% had a positive aPL status with no prior disease events or indications to receive hydroxychloroquine. Analysis showed pregnancy complications related to aPL status were reduced, and the number of live births were higher in patients who received hydroxychloroquine. Independent factors related to poor pregnancy outcomes included previous pregnancy morbidity (odds ratio of 12.1) and triple aPL positivity (odd ratio of 2.6). Pre-eclampsia, abruption placenta and intrauterine growth restriction was more common in group B (10.9%) compared with patients in group A (2%). The frequency of vaginal births was 37.3% in patients in group A compared with 14.3% of patients in group B. No thrombotic events occurred during the study period. – by Shirley Pulawski Disclosure s : The researchers report no relevant financial disclosures.
  6. HCQ may improve pregnancy outcomes for women with antiphospholipid syndrome July 2, 2015Treatment with hydroxychloroquine may reduce pregnancy risks and increase gestational duration in women with antiphospholipid syndrome, according to data presented at the European League Against Rheumatism Annual European Congress of Rheumatology. Researchers conducted an observational study of 170 pregnancies in 96 women with antiphospholipid syndrome (aPL). Of the patients, 31 women treated with hydroxychloroquine (HCQ) for at least 6 months prior to conception underwent 65 pregnancies. In 65 women, 119 pregnancies occurred during the study period. A significantly higher rate of live births was observed in the patients who received HCQ (66.7%) compared with patients who did not receive HCQ (57.1%). Pregnancy morbidity was lower (47.1%) in the group treated with HCQ compared with untreated women (63%), and pregnancy duration was longer in the treatment group (27.6 weeks vs. 21.5 weeks). Vaginal labor was more prevalent in patients treated with HCQ (37.3% vs. 14.3%), and fetal death after 10 weeks of gestation were more infrequent in treated women (2% vs. 10.9%), according to the researchers. A lower frequency of placental complications, including pre-eclampsia, abruption placenta and intrauterine growth restriction, was observed in HCQ-treated women (2% vs. 10.9%). Additionally, the odds ratio for the absence ofpregnancy complications was 2.2 for women who received HCQ before and during pregnancy. – by Shirley Pulawski Reference: Sciascia S, et al. Paper #OP0188. Presented at: European League Against Rheumatism Annual European Congress of Rheumatology; June 10-13, 2015; Rome. Disclosure: The researchers report no relevant financial disclosures.
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