News for Patients

Sun Protection and Connective Tissue Disease

Author: Isabela Wieczorek, MD and Horatio F. Wildman, MD
Date Published: July-2014
Source: Hospital for Special Surgery

After a long winter, summer is finally here. As we spend more time outdoors, it is important to protect against the strong summer rays. Sunlight contains harmful ultraviolet rays that increase the risk of skin cancer, accelerate aging of the skin, and flare connective tissue disease. Sunlight that reaches the Earth’s surface contains two types of ultraviolet (UV) light, both A and B. UVB light is more damaging, causing sunburns and altering DNA in the body’s cells. Sunlight contains about 10-20 times more UVA light, which penetrates the skin more deeply. Both forms of UV radiation cause skin cancer and premature aging of the skin. Tanning beds also produce UVA and UVB radiation, often at much higher levels than the sun.


Should I Refer to a Rheumatologist? Early Warning Signs of Inflammatory Rheumatic Diseases

Author: ACR
Date Published: July-2014
Source: ACR Simple Tasks

Over 11 million Americans suffer from inflammatory rheumatic diseases, and that number jumps to over 50 million when you include osteoarthritis. With numbers this large, prioritizing referrals can become difficult. Signs of a rheumatic disease can be symptomatic of different disorders and can be difficult to identify. To help you prioritize your referrals, here are some red flags to watch out for:


9 Things I Have Learned Through 20 Years of Chronic Illness

Author: Lisa Copen
Date Published: July-2014
Source: Huffington Post

As I approach my 21st year of living with degenerative rheumatoid arthritis, I consider myself well-versed in coping with chronic illness. At the same time, I am constantly surprised at the new lessons that demand to be acknowledged and learned. Living with illness is like sitting on a pottery wheel as a soft lump of clay. It doesn't matter how long we sit there or what shape we are, as long as the hands of illness keep touching our life, we will be reshaped into something new. Here are the top nine things I have learned through 21 years of illness:


PAH disease burden ‘significant’

Author: Laura Cowen
Date Published: July-2014
Source: MedWire News

Patients with newly diagnosed pulmonary arterial hypertension (PAH) have a substantial burden of disease, with more than half hospitalised during the first 3 years post-diagnosis, research shows. “Mean total hospital days in the year after first admission (inclusive of first admission)[…] was 15.3 days (median 7.0 days), which represents a significant burden for both the healthcare system as a whole and for individual patients”, report Charles Burger (Mayo Clinic, Jacksonville, Florida, USA) and colleagues in Chest.


Systemic Sclerosis Patients At Higher Risk To Develop PAH

Author: Rafaela Relvas
Date Published: July-2014
Source: Pulmonary Hypertension News

A team of over twenty researchers recently found that patients with systemic sclerosis are at high risk to develop pulmonary arterial hypertension (PAH). The study, published in the Seminars in Arthritis & Rheumatism, set out to understand the natural history of pulmonary hypertension (PH) in systemic sclerosis (Ssc), through a prospective longitudinal cohort study they called Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma (PHAROS).


Prevent Raynaud’s Pain, Numbness and Tingling

Author: Brenda Goodman
Date Published: July-2014
Source: Arthritis Today

If you’re among the estimated 20 to 30 percent of people with inflammatory arthritis who also have Raynaud’s syndrome, or Raynaud’s phenomenon, a condition that affects blood flow to the extremities and causes pain, numbness and tingling, the fall and spring – months when temperatures are constantly shifting – can be especially challenging. A sudden chill may cause blood vessels to spasm, shutting off circulation and turning affected parts a ghostly shade of white or blue. Fingers, toes, hands, feet, lips and the tongue are most commonly afflicted, and they may become painfully cold, tingling or numb. Thankfully, there are ways to prevent these attacks. Here are some strategies that will help keep you warm through changing seasons.


5 ways to bridge the communications gap with doctors

Author: Sara Beth Cowherd, RN
Date Published: June-2014

In an age where technology dominates our medical world, communication between patient and doctor often leave me wanting. Over the last few years as a patient, I have learned a number of strategies to help bridge the communication gap with doctors. For patients: Speak up. Nobody likes confrontation, but it doesn’t have to be an argument if you are calm and respectful with your questions and requests. If he interrupts you, interrupt back. Yes, really. Afterall, it should be a two-way communication. So speak! For example: “Doctor, thank you for your time today. Would you mind sitting down while we speak. It helps me to relax and not feel like I am being rushed out the door.” The doctor should be open to hearing that.


Lung Disease Inadequately Assessed by FVC in PH-Scleroderma Patients

Author: Maureen Newman
Date Published: July-2014
Source: PHNews

Patients with pulmonary hypertension secondary to scleroderma (also known as systemic sclerosis) may not be properly assessed for interstitial lung disease through forced vital capacity (FVC) alone, according to Dr. Elizabeth Volkmann, of the University of California, Los Angeles. Dr. Volkmann, a rheumatologist, spoke at the annual European Congress of Rheumatology held June 11-14 in Paris, France. Instead, “A structural, physiologic, and patient-oriented composite outcome may be a more comprehensive measure of treatment response,” said Dr. Volkmann, as reported by Skin and Allergy News. Her findings came from an 83-patient trial related to scleroderma treatment. During her study, she found the Transition Dyspnea Index (TDI), the scleroderma modified Health Assessment Questionnaire Disability Index (HAQ-DI), and quantitative, serial assessment of high-resolution computed tomography (HRCT) images of patient lungs to be most robust in assessing interstitial lung disease in systemic sclerosis patients.


8 Ways to Save on Prescriptions

Author: Pain Pathways Magazine
Date Published: July-2014
Source: Pain Pathways Magazine

For many people with chronic pain, medication costs add up quickly. Here are eight practical ways to reduce the burden on your wallet. John recently went on disability because his chronic pain interfered with his ability to work. His limited monthly income makes it challenging for him to pay his bills, especially with the staggering cost of his many prescriptions. Sarah, who also suffers from chronic pain, is able to continue working. She is self-employed and pays for an insurance plan, but it has a high prescription deductible — meaning she has to cover a large portion of her medications on her own. Cliff, another chronic pain sufferer, has a steady job with good health coverage. However, due to the large number of prescription drugs he takes (many of them at the highest prescription tier), his copayments represent a huge chunk of his monthly budget.


Hidden Origins Of Pulmonary Hypertension Revealed By Network Modeling

Author: Brigham and Women’s Hospital
Date Published: June-2014
Source: Red Orbit

In a groundbreaking study, researchers from Brigham and Women’s Hospital (BWH) have identified a related family of molecules believed to be a major root cause of pulmonary hypertension, a deadly vascular disease with undefined origins. This is one of the first studies to leverage advanced computational network modeling to decipher the molecular secrets of this complex human disease. The study is published online June 24, 2014 in The Journal of Clinical Investigation.


Mutation New to PAH Onset is Identified and Remedied in the Laboratory

Author: Maureen Newman
Date Published: July-2014
Source: Pulmonary Hypertension News

Putting an end to one familial case of pulmonary arterial hypertension (PAH) without a known cause, a recent study published in New England Journal of Medicine investigated the mutation responsible for one family’s idiopathic PAH. Lead authors Lijang Ma, MD, PhD, and Danilo Roman-Campos, PhD, principal investigator Wendy Chung, MD, PhD, and fellow colleagues at Columbia University Medical Center and other institutions reported a novel mutation responsible for a channelopathy that was then remedied experimentally in cells through pharmacologic manipulation.


RheumShorts: Fibromyalgia, Scleroderma, Spondylitis

Author: Nancy Walsh
Date Published: July-2014
Source: MedPage Today

News in rheumatology this week included water therapy for fibromyalgia, Gleevec for the often-lethal interstitial lung disease in scleroderma, and a temporary setback for apremilast in ankylosing spondylitis.


Prediction of worsening of skin fibrosis in patients with diffuse cutaneous systemic sclerosis using the EUSTAR database

Author: B. Maurer, N. Graf, B. Michel, U. Müller-Ladner, L. Czirják, C. Denton, et al
Date Published: June-2014
Source: Annals of the Rheumatic Diseases

To identify predictive parameters for the progression of skin fibrosis within 1 year in patients with diffuse cutaneous SSc (dcSSc). Methods An observational study using the EUSTAR database was performed. Inclusion criteria were dcSSc, American College of Rheumatology (ACR) criteria fulfilled, modified Rodnan skin score (MRSS) ≥7 at baseline visit, valid data for MRSS at 2nd visit, and available follow-up of 12±2 months.


Fibrosis—a lethal component of systemic sclerosis

Author: Yuen Yee Ho, David Lagares, Andrew M. Tager & Mohit Kapoor
Date Published: June-2014
Source: Nature Reviews Rheumatology

Fibrosis is a pathological process characterized by excessive accumulation of connective tissue components in an organ or tissue. Fibrosis is produced by deregulated wound healing in response to chronic tissue injury or chronic inflammation, the hallmarks of rheumatic diseases. Progressive fibrosis, which distorts tissue architecture and results in progressive loss of organ function, is now recognized to be one of the major causes of morbidity and mortality in individuals with one of the most lethal rheumatic disease, systemic sclerosis (SSc).


Taking charge of systemic sclerosis: a pilot study to assess the effectiveness of an internet self-management program.

Author: Poole JL, Mendelson C, Skipper B, Khanna D.
Date Published: May-2014
Source: Arthritis Care & Research

Abstract - OBJECTIVE: To assess the effects of an internet self-management program for systemic sclerosis on self-efficacy, health efficacy, and management of care, pain, fatigue, functional ability, and depression. METHODS: Participants logged on to a password-protected web site and completed modules and learning activities at their own pace over 10 weeks. Participants were encouraged to log on to the discussion board, participate in an interactive component of the web site, and respond to questions posted for each module. Participants completed pre- and postintervention questionnaires on perceived self-efficacy, health efficacy, ability to manage care, functional disability,depression, pain, and fatigue. They also completed an 8-question evaluation form regarding satisfaction with the web site, program content, discussion boards, and learning activities.


Systemic Sclerosis Stem Cell Transplant Risky but Promising

Author: Janis C. Kelly
Date Published: June-2014
Source: Medscape Medical News

Autologous hematopoietic stem cell transplantation (HSCT) can produce durable event-free survival for patients with diffuse cutaneous systemic sclerosis (SSc) who are able to survive the procedure, but the type of pretransplant cardiac workup commonly used with HSCT in oncology is not sufficient to identify those who are unlikely to survive HSCT long enough to benefit, according to a new study published online June 24 in JAMA. Coauthor Alois Gratwohl, MD, told Medscape Medical News, "There is now a treatment modality available for patients with severe systemic sclerosis, which can alter the devastating natural course of the disease. HSCT should be envisaged very early on; HSCT cannot change already-existing irreversible organ damage." Dr. Gratwohl is professor emeritus, former head of hematology, and former head of the stem cell transplantation team, Basel University Hospital, Switzerland.


5 Ways You're Not 'Living' With Chronic Illness

Author: I. Jacqueline
Date Published: June-2014
Source: HuffPost Healthy Living

A fine line, ladies and gentleman, its what stands between living with chronic illness and being alive with chronic illness. I've straddled it a few times, but I've figured out some of what on the other side and here's what I know: 1. You're not living with a chronic illness if you're hunting for the why full time.Is it because of a parasite? A bacteria? A cancer? Is it because you wore that blue dress last Tuesday? Is it because you stuck gum in someone else's hair that one time in second grade? There are an infinite list of possibilities as to why you could be sick.


CHEST Releases Updated Pulmonary Arterial Hypertension Guidelines

Date Published: June-2014
Source: CHEST

The American College of Chest Physicians (CHEST) has published new guidelines for the management of pulmonary arterial hypertension (PAH). The guidelines contain 79 recommendations and expert consensus statements to aid clinicians in the management of PAH using the latest drug therapies for adults with the condition, according to an article published online in the journal CHEST.


Current Clinical Management of Pulmonary Arterial Hypertension

Author: R. Zamanian*, K. Kudelko*, Y. Sung, et al
Date Published: June-2014
Source: Circulation Research

During the past 2 decades, there has been a tremendous evolution in the evaluation and care of patients with pulmonary arterial hypertension (PAH). The introduction of targeted PAH therapy consisting of prostacyclin and its analogs, endothelin antagonists, phosphodiesterase-5 inhibitors, and now a soluble guanylate cyclase activator have increased therapeutic options and potentially reduced morbidity and mortality; yet, none of the current therapies have been curative. Current clinical management of PAH has become more complex given the focus on early diagnosis, an increased number of available therapeutics within each mechanistic class, and the emergence of clinically challenging scenarios such as perioperative care.


Effect of menopause on the modified Rodnan skin score in systemic sclerosis

Author: É. Vinet, S. Bernatsky, M. Hudson, C. Pineau and M. Baron
Date Published: June-2014
Source: Arthritis Research & Therapy

Introduction We aimed to evaluate the effect of menopause on skin thickening, as measured by the modified Rodnan skin score (mRSS), in women with systemic sclerosis (SSc). Methods We identified women with either limited or diffuse SSc, aged >= 18 years, enrolled within the Canadian Scleroderma Research Group (CSRG) cohort, between 2004 and 2011. As part of the CSRG cohort, subjects undergo annual assessments with standardized questionnaires and physical examinations. We performed multivariate regression analyses using generalized estimating equation (GEE) to determine the effect of menopause on the mRSS, adjusting for relevant covariates including notably age, follow-up time, and disease duration.