News for Patients


Uptravi Slows Progression of Pulmonary Hypertension Stemming from Connective Tissue Disease, Study Finds

Author: Iqra Mumal
Date Published: August-2017
Source: Pulmonary Hypertension News

Actelion’s Uptravi (selexipag) delays the progression of pulmonary arterial hypertension that stems from connective tissue disease, a follow-up analysis of Phase 3 clinical trial findings indicates. People with PAH-CTD also tolerate the therapy well, according to the study. The PAH part of PAH-CTD refers to high blood pressure in the lungs’ arteries.

 

Use of intravenous epoprostenol as a treatment for the digital vasculopathy associated with the scleroderma spectrum of diseases

Author: Law, S.,Farber, H., Simms, R. 
Date Published: August-2017
Source: Journal of Scleroderma and Related Disorders

Intravenous prostanoid therapy is recommended for severe systemic sclerosis-related digital vasculopathy. The evidence supporting this recommendation is limited. The aim of this study was to evaluate the safety and efficacy of treating scleroderma spectrum digital vasculopathy with intravenous epoprostenol.

 

Prucalopride Can Help Improve Gastrointestinal Symptoms in SSc Patients, Study Shows

Author: Alice Melao
Date Published: August-2017
Source: Scleroderma News

Prucalopride, marketed under the name Resolor in Europe and Resotran in Canada, can safely manage mild to severe gastrointestinal (GI) symptoms associated with systemic sclerosis (SSc), including bowel movement and transit, reflux disease, and bloating, finds a study published in the journal Arthritis Research and Therapy. Doctors have proposed using medicines to improve prokinetics, or motility of the GI tract, in treating SSc patients. But the lack of proper clinical trials demonstrating the therapeutic potential of such drugs in the SSc population discouraged their use in clinics.

 

Clinical Trial Enrolling - Rituximab for Treatment of Systemic Sclerosis-Associated Pulmonary Arterial Hypertension (SSc-PAH)

Date Published: August-2017

Systemic sclerosis-associated pulmonary arterial hypertension (SSc-PAH) is a serious, life-threatening manifestation of systemic sclerosis (SSc), an autoimmune disease of the connective tissue characterized by scarring (fibrosis) and atrophy of the skin, joints and tendons, skeletal muscles, and internal organs, and immunological disturbances. One-year survival for patients with SSc-PAH ranges from 50-81%. There is currently no cure for SSc-PAH and treatment is limited to vasodilator therapy used in all forms of PAH. In recent studies, immunotherapy was shown to be effective in treating SSc-interstitial lung disease, another serious, life-threatening manifestation of SSc. In addition, there are compelling pre-clinical data and anecdotal clinical reports that suggest modulation of the immune system may be an effective strategy for treating SSc-PAH. To test this approach, this trial will determine if rituximab, an immunotherapy, has a marked beneficial effect on clinical disease progression, with minimal toxicity, in patients with SSc-PAH when compared to placebo.

 

Phase 3 Trial of Actemra for Systemic Sclerosis Completes Enrollment

Author: Genentech
Date Published: August-2017
Source: Healio

This week, Genentech announced its phase 3 trial of Actemra for patients with systemic sclerosis has completed enrollment. The study will compare the drug’s safety and efficacy with placebo in patients with systemic sclerosis, according to a press release.

 

5 Ways Scleroderma Can Affect Your Eyes

Author: Wendy Henderson
Date Published: August-2017
Source: Scleroderma News

Because scleroderma is an autoimmune disease which affects connective tissue, symptoms and complications can appear in any part of the body, including the eyes. This article includes a list of some of the more common eye complications experienced by people living with scleroderma.

 

8 Tips for Exercising When You Have Scleroderma

Author: Marta Duarte
Date Published: August-2017
Source: Scleroderma News

Balance your sessions. Even if you’re taking things slowly, if any of your joints feel painful for more than two hours after you workout, it’s recommended that you make the next exercise session less intense than the previous one. Slow down when necessary.

Enthusiasm is very good (and hard to come by most days) but if you feel out of breath or in more pain than you’re used to, slow down.

 

How to Fuel Engaged Patient Dialogue

Author: Carina Stanton
Date Published: July-2017
Source: The Rheumatologist

In the average 10–15 minutes a rheumatologist has to spend with a patient during a clinic visit, limited time exists for extensive dialogue. Yet, taking the time to delve a little deeper by asking a patient questions in order to understand and address concerns could make a big difference in a patient’s care.

“Too often, a patient may feel [too] intimidated to ask a question to clarify a term we use or may fear embarrassment [and avoid] bringing up a concern that can be related to their condition, such as intimacy issues,” notes Ara Dikranian, MD, a rheumatologist with the Cabrillo Center for Rheumatology in El Cajon, Calif.

 

5 Tips for Managing Raynaud’s Syndrome Through the Summer

Author: Wendy Henderson
Date Published: July-2017
Source: Scleroderma News

You may think the summer months offer some respite to those who suffer from Raynaud’s syndrome but the warmer months can bring their own set of problems. Many offices, shopping malls, and other public spaces turn on the air conditioning in the warmer weather, which is great for helping you cool down, but many places have the AC turned up so high that it brings on symptoms of Raynaud’s.

 

Biomarkers Predict Digital Vascular Events in Scleroderma

Author: Gregory M. Weiss, MD
Date Published: July-2017
Source: Rheumatology Network

The likelihood of digital vascular pits, ulcers, or gangrene is increased in patients with scleroderma who are double-positive for anti-interferon-inducible protein 16 and anticentromere autoantibodies. Particularly high anti-interferon-inducible protein 16 levels were found in patients with scleroderma who had active ischemic ulcers or gangrene. Measuring anti-interferon-inducible protein 16 levels in patients with scleroderma and anticentromere antibody positivity may help stratify those at high risk for significant digital vascular events.

 

Systemic Sclerosis Linked With Altered Gut Microbiome

Author: Gregory M. Weiss, MD
Date Published: July-2017
Source: Rheumatology Network

The numbers of Bacteroidetes bacteria in the GI tracts of 2 separate cohorts of patients with systemic sclerosis were significantly reduced when compared with healthy controls. American patients with systemic sclerosis had more extensive alterations in their intestinal microbiota than those in a Norwegian cohort. An abundance of Prevotella species was associated with moderate-to-severe GI symptoms in patients with systemic sclerosis. Clostridium species abundance was associated with low GI symptom severity, and Lactobacillus with none-to-mild constipation.

 

More Than Systemic Sclerosis - The Inside Story

Author: Boehringer Ingelheim
Date Published: June-2017
Source: Boehringer Ingelheim

More than Systemic Sclerosis: The Inside Story’ is a collection of portraits showcasing the unique and inspiring stories of people living with systemic sclerosis, also known as scleroderma. Launched to coincide with World Scleroderma Day 2017 (29 June), this global initiative highlights the importance of understanding the ‘inside story’ of each individual living with systemic sclerosis. The initiative also aims to increase awareness of the potential serious consequences when fibrosis develops in vital organs such as the lungs. The new photography and film gallery features eight patients from seven countries, each telling their story about living with this rare condition.

 

Highland Park writer casts light on scleroderma

Author: Karen Berkowitz
Date Published: June-2017
Source: Chicago Tribune

Lisa Goodman-Helfand believes her childhood would have been less emotionally painful had she been told the gravity of her scleroderma diagnosis from the start. When she was 10, a series of tests at a Chicago pediatric hospital confirmed what a dermatologist had suspected. She had scleroderma, a potentially fatal disease of the autoimmune system characterized by a thickening and hardening of the skin.

 

Mortality risk prediction in scleroderma-related interstitial lung disease: the SADL model

Author: Julie Morisset, MD; Eric Vittinghoff, PhD; Brett M. Elicker, MD; Xiaowen Hu, MD; Stephanie Le, MD; Jay H. Ryu, MD; Kirk D. Jones, MD; Anna Haemel, MD; Jeffrey A. Golden, MD; Francesco Boin, MD; Brett Ley, MD; Paul J. Wolters, MD; Talmadge E. King, Jr., MD; Harold R. Collard, MD FCCP; Joyce S. Lee, MD
Date Published: June-2017
Source: Chest Journal

Rationale Interstitial lung disease (ILD) is an important cause of morbidity and mortality in scleroderma (Scl). Risk prediction and prognostication in Scl-ILD patients is challenging because of heterogeneity in the disease course.

 

Galectin’s Candidate Therapy GR-MD-02 Patent Extended to Cover Several Illnesses Including Systemic Sclerosis

Author: Alica Melao
Date Published: June-2017
Source: Scleroderma News

The U.S. Patent and Trademark Office has granted Galectin Therapeutics a new patent that extends coverage of its candidate therapy GR-MD-02 to treat systemic sclerosis and other diseases in which high levels of the inducible nitric oxide synthase (or iNOS) enzyme causes inflammation. “With this patent extending claims to a wide-range of diseases with an inflammatory response, we now have a broad range of patent coverage both for diseases in which we currently have developmental programs, as well as, potential areas of future investigation,” Dr. Peter G. Traber, Galectin’s CEO and chief medical officer, said in a company press release.

 

10 Tips for a Healthy Recovery Following a Lung Transplant

Author: Wendy Henderson
Date Published: June-2017
Source: Scleroderma News

For some chronic lung disease patients, their lung function declines so much that they need to have a lung transplant. However, it’s a complicated procedure and recovery can be slow. To ensure you have the healthiest recovery possible, you’ll need to adhere to a few basic rules, according to the Cleveland Clinic and the Cystic Fibrosis Foundation. MORE: As the weather turns warmer, many of us will be thinking about vacations and traveling. Here’s some advice for traveling with a lung disease.

 

Phase 2 Trial Results Presented of Corbus’ Anabasum as Treatment for Systemic Sclerosis

Author: Joana Fernandes, PhD
Date Published: June-2017
Source: Scleroderma News

Results of a Phase 2 clinical trial (NCT02465437) evaluating the effects of Corbus Pharmaceuticals’ anabasum (formerly known as Resunab or JBT-101) support this treatment as a potential option for patients with diffuse cutaneous systemic sclerosis. The study showed that treatment with anabasum affects the activity of nearly 1,940 genes associated with different mechanisms, including molecules associated with inflammation, skin regulation and structure, and fat metabolism.

 

#SclerodermaAwarenessMonth: Nicola Whitehill Profiles Scleroderma Patients From Around the World

Author: Wendy Henderson
Date Published: June-2017
Source: Scleroderma News

One of our resident columnists, Nicola Whitehill, has been using Scleroderma Awareness Month to profile some of the people who live with the disease from around the world. MORE: Find out how you can support Scleroderma Awareness Month here. Writing on her own personal blog Raynauds Scleroderma Awareness, Nicola shares a rare view into the lives of those living with scleroderma. Nicola was diagnosed with scleroderma in 1997 at the age of 24 and was given just 15 months to live. Two decades later, she’s a proud advocate and activist for the disease.

 

Rheumatologist Calls for More Screening of Scleroderma Patients for Pulmonary Hypertension

Author: Joana Fernandes, PhD
Date Published: June-2017
Source: Scleroderma News

Many systemic sclerosis patients develop pulmonary arterial hypertension, but not all who are suspected of having PAH are referred for testing, according to rheumatologist Janet Pope. She called for more commitment to screening in an editorial in Arthritis Research & Therapy. The piece was titled “Pulmonary arterial hypertension in scleroderma: care gaps in screening.” PAH is a lung disease marked by high blood pressure in pulmonary arteries. It can lead to heart failure and death.

 

Scleroderma patients face barriers to treatment, discrimination at hands of insurers

Author: Chronic Disease Coalition
Date Published: June-2017
Source: Chronic Disease Coalition

Patient discrimination – from denying patients’ access to use charitable assistance to pay their bills to outright denial of coverage for lifesaving medical treatment – is a real threat for many people living with chronic and life-threatening conditions. And for people living with scleroderma, their story is sadly no different.