The study will be on the risk of damage to vision related to taking hydroxychloroquine (HCQ) or chloroquine (CQ) in Canadians living with lupus and rheumatoid arthritis.
The research team at Arthritis Research Canada and the University of British Columbia want to do research to:
Accurately determine the risk of damage to vision related to taking HCQ or CQ in Canadians living with systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA)
Provide annual vision testing to approximately 3,000 patients with SLE or RA who have been taking HCQ or CQ for more than 5 years
The research team will use a state-of-the-art vision testing method that can detect any signs of damage to vision at an earlier stage before the damage is irreversible. The researchers need your help in designing this research project. They want your opinion about the best way to invite patients to participate in this study:
The research team will send a letter to the patients who have SLE or RA and have been taking HCQ or CQ for more than 5 years. The letter will ask the patient to ask their doctor (family doctor or rheumatologist) to send a referral to see an ophthalmologist for the vision tests.
The research team contacts the family doctor or rheumatologist directly and requests that the doctor tells their patients with SLE and RA about the study and sends a referral to the ophthalmologist.
Click on this survey link to select your preferred option.
BC PharmaCare is looking for your input on guselkumab (Tremfya™) for the treatment of plaque psoriasis and biosimilar infliximab (Renflexis™) for the treatment of ankylosing spondylitis, adult or pediatric Crohn’s disease, plaque psoriasis, psoriatic arthritis, rheumatoid arthritis, and adult or pediatric ulcerative colitis
Guselkumab (Tremfya™) and biosimilar infliximab (Renflexis™) is now being considered for coverage under the British Columbia Ministry of Health’s PharmaCare program. By filling out a questionnaire on a website called Your Voice, you can provide your input on: Continue reading →
Picture from North Shore News: http://www.nsnews.com/lifestyle/deep-cove-teen-has-cautionary-health-tale-1.23127827
Deep Cove resident Senya Kyle has lived with chronic pain from systemic juvenile idiopathic arthritis (sJIA) since she was a little girl. Senya is now a Grade 10 student at Seycove secondary. Instead of playing soccer and hiking Quarry Rock with her friends and participating in other school activities, she watches from the sidelines. After school, she can’t even join her friends for a walk around the mall.
Due to her sJIA, Senya has fused vertebrae in her neck, along with serious joint damage in her feet. As of yesterday, the number of ankle surgery Senya has gone through is four. According to Senya, every step she takes is a dull ache mixed with stabbing pain in her ankle. Sometimes, her pain is so unbearable that she cannot move. She is forced to live a sedentary life at the young age of 15. In an interview with North Shore News, Senya says: “That’s pretty much all I can do, is sit down and hope that (the pain) will go away.” At her worst, Senya had 40 joints inflamed at one time.
As we say goodbye to 2017, we can reflect on a year where in media coverage, in workplaces, and in our daily conversations, there was much focus on issues that threatened to divide us. The arthritis community in Canada has also faced issues that have challenged us to re-examine our beliefs and principles on how to best serve people living with arthritis.
As I look back over the past 12 months I think of the people with arthritis we have met or engaged with face-to-face and on-line, many of who still face barriers to accessing arthritis trained specialists, public and private health insurance reimbursement for needed medications, emotional and psychological support, income assistance or workplace supports. It’s hard in the world of chronic diseases such as arthritis – marked by pain, disability and individual and family struggle – to see the positive. But I must. I know no other way of living my own life with rheumatoid arthritis (RA) and osteoarthritis (OA) than to try to think positively about my own situation and those our organization serves. Continue reading →
Au moment de laisser 2017 derrière nous, force nous est de reconnaître que dans les médias, les milieux de travail et même dans nos conversations de tous les jours, on a parlé beaucoup plus de questions susceptibles de nous diviser que de nous rassembler. La collectivité arthritique du Canada a également été confrontée à des enjeux qui l’ont obligée à réexaminer ses principes et convictions quant à la manière de servir au mieux les personnes atteintes d’arthrite.
Faisant le bilan des douze derniers mois, je pense aux personnes atteintes d’arthrite que nous avons rencontrées ou avec lesquelles nous avons échangé en personne ou en ligne. Plusieurs font toujours face à des obstacles les empêchant d’avoir accès à un spécialiste formé pour traiter l’arthrite, au remboursement par un régime public ou privé des médicaments qui leur sont nécessaires, à un soutien émotionnel et psychologique, à l’aide au revenu ou au soutien au travail. Il est difficile de rester positif lorsqu’on évolue dans un monde de maladies chroniques telles que l’arthrite, marqué par la douleur, l’incapacité et les difficultés autant personnelles que familiales. Et pourtant, c’est ce que je me dois de faire. Je ne connais pas d’autre façon de vivre ma vie de personne atteinte de polyarthrite rhumatoïde (PR) et d’arthrose que celle où domine la pensée positive quand il s’agit de ma propre situation et de celles des personnes que notre organisation s’efforce de servir. Continue reading →