ACE has carefully monitored the research on biologic use during pregnancy in response to the many ACE members who are thinking of starting a family and have concerns about continuing their medications.
We have previously reported on the study by Dr. Mary De Vera, Assistant Professor at the University of British Columbia’s Faculty of Pharmaceutical Sciences, and her team on “Patterns of medication use before, during, and after pregnancy among women with systemic lupus erythematosus: A population-based study”.
Dr. De Vera’s team assessed the use of medications in pregnant women with lupus in British Columbia. Most pregnancy trimesters in the study were exposed to hydroxychloroquine and/or chloroquine (41 to 45% of exposed pregnancy trimesters). The research observed an increase in glucocorticosteroid (like prednisone) exposures during pregnancy, as well as post-delivery. Findings emphasized the importance of counseling women regarding childbearing decisions as well as the need for evaluation of the risk-benefit profiles of medications in pregnancy. Continue reading →
Global RA Network present results of international survey of the rheumatoid arthritis patient care experience at ACR / ARHP Annual Meeting
The Global RA Network, founded by patient-led national arthritis organizations from 21 countries, presented the results of a global survey – “Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey”1 – investigating patient-reported experiences of rheumatoid arthritis models of care at the American College of Rheumatology’s (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Meeting.
At an ACR poster session on November 5, 2017, Cheryl Koehn, lead author of the abstract and President of Arthritis Consumer Experts, Canada’s largest patient-led arthritis organization, said: “The survey highlights the difference between best practice RA models of care and the patient’s lived experience of managing a life-long condition like RA. The survey will also advance collaboration between the RA patient organizations involved in the Global RA Network. By analyzing and interpreting the survey results for each participating country, the Global RA Network can develop education and information initiatives to raise awareness of symptoms and ensure RA patients receive the best possible care.”
The first crowd-sourced research of its kind designed by RA patients, for patients, to better learn what their care experiences are like in the their country, the global survey fielded responses from 2,690 respondents from 14 countries in Europe, the Middle East, and North and South America. The survey highlights self-reported gaps and delays in all five key elements of a standardized RA models of care, including significant delays to diagnosis and specialist access globally, delayed therapy effectiveness assessment, and additional education/information to increase the level of confidence to describe RA and improve effective self-care practice.
ACE presenting abstract at American College of Rheumatology (ACR) Annual Meeting
Cheryl Koehn will be presenting Poster 353 on Sunday, November 5 between 9 am-11 am: Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey
The 81st American College of Rheumatology (ACR) Annual Meeting being held November 3-8 in San Diego is the world’s premiere meeting of over 12,500 rheumatologists and rheumatology health professionals, sharing the latest arthritis advances and research.
Arthritis Consumer Experts (ACE) is excited to announce that Cheryl Koehn, Founder and President of ACE, will be presenting Poster 353: Patient Experiences of Rheumatoid Arthritis Models of Care: An International Survey on Sunday, November 5 from 9am-11am at Poster Hall C. We encourage you to attend the presentation. Cheryl, as lead author of the abstract, will be discussing the results of a first ever global survey, by patients, for patients, examining what patients’ RA models of care experiences are like in their country.
The survey was conducted by the Global RA Network, founded in 2016 by RA patient organizations and leaders from 21 countries to build international relationships and work on common goals and initiatives to improve the lives of people living with RA around the world.
Massage therapy for arthritis is conducted by a licensed massage therapist or physiotherapist. After consulting with your specialist, you can do self-massages at home. In a research study, Tiffany Field, PhD, director of the Touch Research Institute at the University of Miami School of Medicine, found that regular use of the simple therapy led to improvements in pain, stiffness, range of motion, hand grip strength and overall functions of the joints.
In another study, Field and her team found that massage also benefits people with painful hand or wrist arthritis. There were twenty-two adults, mostly women, in this study. The women have been diagnosed with either hand or wrist arthritis. Each participant was given four weekly massages from a therapist and taught to do their own massage to alleviate joint pain and soreness at home. Field concluded: “Just a 15-minute, moderate pressure massage per day, led to reduced pain and anxiety, and increased grip strength for the participants as measured on comparative pre- and post-therapy tests.”
ACE launches first of three new blogs to help you “power up” your arthritis knowledge, get more connected to the community, and learn the latest about health policy and politics affecting our group of chronic diseases.
As Canada’s largest national patient-led organization and provider of evidence-based information and education programming, ACE is always looking for better ways to “power up” Canadians living with arthritis.
As always, we want to know what you think. We encourage you to share feedback and offer topics of interest for future blog posts.
We hope you had a great Arthritis Awareness Month in Canada!
Is your mouth a gateway to getting arthritis?
When Health Canada’s Canadian Institutes of Health Research was created in 1994, I, like many, was puzzled that they included oral health along with musculoskeletal health in the research pillar known as the Institute for Musculoskeletal Health and Arthritis (IMHA). After all, what do researchers trying to solve the thousands of mysteries that make up “arthritis”, a group of over 100 different diseases, have to do with teeth. But were they ever smart to do so; the latest research shows the mouth and the joints are definitely connected.
Viral infections are responsible for approximately 1% of all cases of infectious arthritis. These infections include parvovirus B19, HIV, hepatitis B, hepatitis C, hepatitis E, human T-lymphotrophic virus type-1, and arboviruses. Infectious arthritis can last for hours or days and is marked by pain, heat, rash, redness, and swelling. Some people, particularly the elderly, will experience fever and chills. Most infectious arthritis cases involve only one joint and more than half of these affect the knee. It can also affect the wrists, ankles, shoulders, hips, and spine.
According to Everyday Health, infectious arthritis occurs when germs invade the joint due to:
animal or insect bites
injury to the joint
bacterial infection during surgery
spread from a nearby infection
blood stream infection
People with an increased risk of getting infectious arthritis include people who: Continue reading →
“Preventing Rheumatoid Arthritis (Pre-RA): perspectives of people with RA, people at risk and of rheumatologists” study
A research study funded by the Canadian Rheumatology Association’s Initiative for Outcomes in Rheumatology cAre (CIORA) wants to understand the perspectives of people with RA, those at risk of RA and health care providers about potential treatments aimed at preventing rheumatoid arthritis. Arthritis Consumer Experts is a partner organization on the project.
Aged over 18?
Someone with rheumatoid arthritis OR you have a first degree relative (parent, sibling, adult child) with rheumatoid arthritis?
Someone with access to a computer and the internet?
Battling rheumatoid arthritis – American Ninja Warrior style. #WeAreAllAbel
The TV series American Ninja Warrior (ANW) is a show where contestants compete to win the grand prize by finishing an obstacle course requiring strong, agile and determined athleticism. Contestants must have faith that they can conquer any obstacle put in front of them – the same type of faith some have when battling rheumatoid arthritis. In ANW contestant Abel Gonzalez’s case, this was true in the literal sense.
Abel grew up in Chicago with a rough childhood. His parents married young and had little financial means. In an interview with EverydayHealth, he said: “My dad was abusive. He sold tires at a flea market to try to help us get by. When I was 10, my mom and dad’s fighting escalated.” His parents eventually split up and Abel and his brothers were forced to split up. Abel and his brother were sent to live with family members in Texas, while his two younger brothers stayed behind to live with his mother in Chicago.
“I can remember my younger brothers sitting on the steps as Matthew and I drove away for good. It devastated me to be apart from my younger brothers. I was only 10. I thought that maybe I had caused my parents to get divorced,” Abel added.
Call for patient input on biosimilar infliximab (Merck) for rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis and plaque psoriasis
Do you have rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis or plaque psoriasis? We need your valuable input
Health Canada defines biosimilars as biologic medicines that are similar to, and would enter the market after, an approved originator biologic (such as Remicade®).
The Common Drug Review (CDR) is currently welcoming patients and their caregivers to provide input to patient organizations on the manufacturer’s submission for biosimilar infliximab for the treatment of rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis and plaque psoriasis. The originator biologic, or reference product, is infliximab (Remicade®).
The CDR is part of the Canadian Agency for Drugs and Technologies in Health (CADTH). The CDR conducts objective, rigorous reviews of the clinical and cost effectiveness of drugs, and provides formulary listing recommendations to the publicly funded drug plans in Canada (except Quebec).
To help them make their recommendations, the CDR accepts input from patient organizations and groups, like Arthritis Consumer Experts (ACE). Because patient input is vitally important to government decision-making about medications, we would like to gather your views and share them with the CDR.