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In this issue
Listening to you Arthritis Consumer Experts (ACE)
JointHealth™ insight  Published July/August 2007

This on-line July/August issue of JointHealth™ monthly provides you with information about the newest JointHealth™ podcasts, making the most of your medical appointments, and a spotlight on adult Still's disease.

Education

JointHealth™ podcasts



Last September, Arthritis Consumer Experts launched its JointHealth™ podcast program-the first arthritis education program available in audio format in Canada. Four podcast programs featured leading rheumatologists, arthritis research scientists and patient volunteers and activists working to improve treatment and care for people living with arthritis across Canada.

In plain language accessible to all listeners, Drs. John Esdaile, Kam Shojania, Diane Lacaille, and Linda Li shared their expertise in the areas of: Listener feedback on these first four instalments of the JointHealth™ podcast program was very enthusiastic. Here are a few of their comments:

Listener comment:
WOW !!!!!! I'm impressed. Congratulations on this innovative idea. Any vehicle to transmit knowledge is good. This one is really innovative and will be appreciated by many, I'm sure.

Listener comment:
I have rheumatoid arthritis and find your podcast very interesting.

Listener comment:
Thank you for giving me the opportunity to hear information on arthritis. I have heard all three podcasts and I found important issues were covered. I always thought podcasts would be a valuable way of providing information and was happy to see your email announcing the program's launch. . .Thank-you for being so passionate in helping others with arthritis.

Given this positive feedback, ACE made it a priority to produce more of these high quality audio education programs for 2007.

In January and February of this year, the JointHealth™ podcast program featured leading patient activists and ACE advisory board members Jay Fiddler and Gordon Whitehead. They provided valuable information on how people with arthritis are involved in arthritis research decision-making, what volunteer opportunities are available in research organizations in Canada, and importantly, what the arthritis community overall is doing to improve the lives of people living with arthritis.

In March and May, Drs. Shojania and Lacaille joined ACE in the JointHealth™ podcast studio to talk about the best treatment plan for inflammatory arthritis and the process of becoming an arthritis research scientist.

Here is an overview of the new group of 2007 JointHealth podcasts:

Jay Fiddler - People with arthritis and arthritis research decision-making

Jay Fiddler is a woman living with adult Still's disease (for more on adult Still's disease, please see this month's "spotlight on Adult Still's disease"). Jay is a very active member of the arthritis consumer community, and believes passionately in the importance of making sure that people with arthritis (or, consumers) have an active role in decision-making about arthritis research.

As the former co-chair of the Consumer Advisory Council of the Canadian Arthritis Network, Jay can speak with authority about the challenges and rewards of participating in research, from a consumer (patient) perspective. Some areas covered in this podcast include:
  • How people with arthritis participating in arthritis research decision-making improves its relevance
  • How people with arthritis can become involved in arthritis research-what are the different areas to get involved in
  • Empowering and enabling people with arthritis to participate in research decision-making and the entire process of discovery and getting information about research out to the public
  • How to sustain the effective participation of people with arthritis in arthritis research decision-making.
This podcast will be of interest to anyone who believes that the voices of people living with arthritis must be heard when critical decisions about arthritis research are being considered.

Gordon Whitehead - Alliance for the Canadian Arthritis Program

Gordon Whitehead is a consumer advocate who has been living with rheumatoid arthritis for more than 30 years. As co-chair of the Alliance for the Canadian Arthritis Program (ACAP), Gordon helped to develop 12 national standards for arthritis prevention and care.

This podcast explains those standards, and outlines three priority standards which have been identified as most urgently needed.

Topics covered in this podcast include:
  • Learning about the Alliance for the Canadian Arthritis Program
    • Who is the Alliance?
    • Why create an alliance?
    • What has the Alliance accomplished since it formed?
  • National standards for arthritis prevention and care: developing 12 standards to improve the lives of Canadians living with arthritis
  • What are the priority standards?
    1. Every Canadian must be aware of arthritis
    2. All relevant health professionals must be able to perform a valid, standardized, age-appropriate musculoskeletal screening assessment
    3. Every Canadian with arthritis must have timely and equal access to appropriate medications.
  • How does the Alliance plan to implement the priority standards?
This podcast provides an inspiring look at the ways that arthritis consumer advocates are working to make arthritis treatment and care in Canada the best it can be. For more information about ACAP, visit www.arthritisalliance.ca

Dr Kamran Shojania - Navigating the treatment path in inflammatory arthritis

In this valuable podcast, renowned rheumatologist Dr Kamran Shojania provides information about the treatment of inflammatory arthritis, from diagnosis onwards. Dr Shojania covers a wide range of topics, including the patient-rheumatologist relationship (for more on this, please see the article "Making your time count-how to get the most out of an appointment with your rheumatologist" in this month's issue of JointHealth monthly).

Other topics include:
  • The challenge of getting diagnosed
  • The impact of the diagnosis
  • Accepting one's diagnosis
  • Learning about one's treatment options
  • The basics about non-steroidal anti-inflammatory medications (NSAIDs and coxibs or "COX-2s") - their use and safety concerns
  • The basics about disease modifying anti-rheumatic medications (DMARDs) -
  • "Start early, be aggressive" concept
  • A brief description of methotrexate, hydroxychloroquine, and sulfasalazine, and how they are used alone and in combination
  • Other DMARDs used if the above list of medications are ineffective
  • Biologic response modifiers -
    • Description of each of the five available
      • abatacept (Orencia®) - what it is, how it is given
      • adalimumab (Humira®) - what it is, how it is given
      • etanercept (Enbrel®) - what it is, how it is given
      • infliximab (Remicade®) - what it is, how it is given
      • rituximab (Rituxan®) - what it is, how it is given
  • Addressing the fear of taking medications, including side effects
  • Discussion about the "social stigma" of having to take medications
  • Monitoring for side effects delivers "peace of mind"
  • Adjusting one's treatment path along the way
  • Living life - the good, the bad, the ugly, the good
This podcast is an excellent "primer" for people living with inflammatory arthritis at all stages of the treatment path. It is the kind of in-depth conversation many people with arthritis wish they had the time to have with their rheumatologist.

Dr Dianne Lacaille - A conversation with an arthritis research scientist

This JointHealth™ podcast program provides the consumer/public listener with insights into the arthritis research work of Dr. Diane Lacaille, Assistant Professor at the University of British Columbia, research scientist at the Arthritis Research Centre of Canada, member of the Canadian Arthritis Network and 2007 YWCA Women of Distinction Award finalist. Dr. Lacaille's work focuses on rheumatoid arthritis and its impact on the individual and society. Topics of discussion include:
  • Becoming a research scientist
  • Dr. Lacaille's work at the Arthritis Research Centre of Canada
  • Dr. Lacaille's work at the Canadian Arthritis Network
  • Looking to the future of arthritis research in Canada
  • 2007 YWCA Women of Distinction Award finalist
We encourage JointHealth monthly subscribers to take advantage of these informative programs. Click here to download JointHealth™ podcasts through the ACE website, or click here to become a regular subscriber through iTunes®. If you choose to use iTunes® to access JointHealth™ podcasts, you can download them to your mp3 player, making them totally portable and available whenever-and wherever-works for you.

As always, we welcome your suggestions about content for future podcasts. If there is an issue or topic you would like us to cover, please let us know at feedback@jointhealth.org

Education

Making your minutes count-how to get the most out of an appointment with your rheumatologist (or other health care provider)

Rheumatologists are medical doctors who have many years of additional training, on top of their regular medical schooling, to become specialists at diagnosing and treating arthritis. People living with arthritis will often comment that their rheumatologist is the most important healthcare professional in their lives, and that this doctor-patient relationship is critically important to them.

For many people, getting referred to a rheumatologist at all can be a real challenge. In Canada, we face a critical shortage of rheumatologists: there are fewer than 270 in the country to care for the approximately 4,000,000 Canadians living with arthritis. Obviously, not everyone with arthritis will have access to a rheumatologist-for some tips on how to get a referral to a rheumatologist, please see our article in the March issue of JointHealth monthly.

Once you have your referral, it is extremely important to make the most of your time with your rheumatologist. Because they are in such high demand, appointments can at times be shorter than you might like them to be. Here are some ideas for getting everything you can out of the appointment:
  • Make a list of the three most important questions you want to ask your doctor. You don't want to remember the most important thing you wanted to ask the doctor as you are driving home from the appointment.
  • Bring a support person with you to your appointments, especially at the beginning of your disease experience and when you are trying to build a treatment path suitable to your health goals. This can help the close people in your life to understand the seriousness your disease, and give them the opportunity to ask questions. It also provides you with someone to listen and take notes; often, especially just after diagnosis, patients are frightened, overwhelmed, and very ill, so having another person there to keep the details straight can be very helpful.
  • Keep track of your symptoms throughout the month, so that you can report them accurately at your next appointment; this will help the doctor to understand how your disease and treatment are progressing.
  • Be honest about your activities. If you have missed a few doses of your medications, if you have been enjoying a glass of wine with dinner, or if you haven't been exercising, answer your doctor's questions honestly. They will appreciate your openness and it will help them to advice you about treatment in an informed way.
  • Stay on top of the details-know when you will be needing prescriptions renewed, whether you need appointments to see other specialists for issues related to your arthritis, and when any diagnostic tests are scheduled for.
  • If you feel they have heard your concerns during appointments and responded in a way that helps you to live better with your disease, pass those thoughts on to the rheumatologist. Doctors appreciate hearing and knowing that they are helping their patients.
Education and Treatment

Spotlight on adult Still's disease

We are always happy to present information requested by our readers, and are excited to be receiving requests for spotlight features on different types of arthritis. Please contact us at feedback@jointhealth.org if you would like us to profile a specific type of arthritis.

Adult Still's disease is a rare form of arthritis which is characterized by high fevers, inflammation of the joints, and a salmon-coloured rash on the skin. In children, this disease is known as systemic onset juvenile rheumatoid arthritis; when it occurs in people over age 15, it is known as adult Still's disease.

Adult Still's disease affects men and women in approximately equal numbers. Though it can occur in adults of all ages, it tends to strike two age groups most commonly: those from age 15 - 25, and those from age 36 - 46. A fairly rare form of arthritis, adult Still's disease affects approximately 1 in 100,000 adults.

The cause of adult Still's disease syndrome remains unknown, although scientists think that it may be the result of an environmental trigger such as a prior viral or bacterial infection, ultraviolet light exposure, toxins, stress, among others. Because the disease only very rarely affects members of the same family, researchers are doubtful that there is a genetic connection.

Diagnosis of adult Still's disease

Adult Still's disease has several warning signs, which may be present at the onset of disease. These include:
  • High (40 degrees or higher) spiking fever, often occurring in the late afternoon or early evening; rarely, fevers can occur twice a day
  • Joint pain and inflammation
  • Faint, salmon-coloured rash, which may be bumpy or flat and will often occur with fever
  • Muscle pain, which often comes and goes with fever and may be severe
  • Sore throat
  • Swollen lymph nodes in the neck
  • Enlarged liver and/or spleen
  • Poor appetite, nausea, and weight loss
The early symptoms of adult Still's disease are very similar to those of many other diseases, including rheumatic fever (due to the streptococcus bacteria, infectious mononucleosis, lymphoma, and other forms of arthritis like lupus. For this reason, it is often a very challenging disease to diagnose, and one, which can easily be misdiagnosed. If you suspect that you may have adult Still's disease, speak with your doctor.

The first step in the process of diagnosing adult Still's disease is often eliminating other diseases that have similar symptoms to those of adult Still's disease. Once other conditions are proven not to be present, doctors may begin to investigate the possibility of adult Still's disease.

If your doctor believes you may have adult Still's disease, you will usually be referred to a rheumatologist-a specialist in the treatment of arthritis. Rheumatologists have many years of extra training on top of their regular medical schooling, and are experts at diagnosing and treating all forms of arthritis, including adult Still's disease.

To get a firm diagnosis of adult Still's disease, doctors may run a number of tests. These may include:
  • CT scan or sonogram, to check for inflammation of liver and/or spleen
  • X-ray imaging, to check for changes in the wrists, spine, feet, or finger joints
  • Echocardiogram, to look for inflammation of the lining of the heart or lungs
  • Blood tests, including those to examine white and red blood cell counts, and liver function
Treatment of adult Still's disease

Once your rheumatologist has diagnosed adult Still's disease, there are effective treatments available to help you manage the symptoms. While there is no known cure for adult Still's disease, treatments are available, and your rheumatologist is the best person to discuss these with and formulate a treatment plan to address all aspects of adult Still's disease.

There are several groups of medications which are used to treat adult Still's disease. The type of medication you take will depend on your symptoms, the severity of your disease, and any side effects you experience. These groups of medications include:
  • Non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (for example Advil® or Motrin IB®), naproxen (or Naprosyn®), diclofenac (or Voltaren® and Arthrotec®). These drugs are often used to control mild symptoms.
  • Corticosteroids, such as prednisone may be used to control high fever spikes, severe joint swelling and pain, and complications with internal organs.
  • Methotrexate, a disease-modifying anti-rheumatic drug (DMARD), is often used in the treatment of adult Still's disease.
  • Biologic response modifiers, including anakinra (Kineret ), infliximab (Remicade ), and etanercept (Enbrel ), have been used with success in a number of patients; however, because the number of people with adult Still's disease is so small, large-scale tests have not yet been done to establish how well these drugs work in patients with this disease.
People with adult Still's disease are at high risk for joint destruction, caused by chronic inflammation. In severe cases, joint replacement surgery may be required. It is very important for people living with adult Still's disease to keep to their medication regime, as minimizing inflammation is key to preventing joint destruction.

In some people, adult Stills disease clears up on its own within one year, or after only a single episode; for others, it can be a chronic, on-going condition for years, which can cause debilitating arthritic symptoms, and even death. Others will experience periodic flares of disease activity, with periods of remission in between.

As with any form of arthritis, maintaining a healthy lifestyle is a critical part of any treatment plan for adult Still's disease. Poor diet, lack of exercise, and high levels of stress may make disease activity worse, so healthy eating, appropriate levels of aerobic and strengthening exercise, and relaxation are highly recommended.

Acknowledgement

Over the past 12 months, ACE received unrestricted grants-in-aid from: Abbott Laboratories Ltd., Amgen Canada / Wyeth Pharmaceuticals, Arthritis Research Centre of Canada, AstraZeneca Canada Inc., Bristol-Myers Squibb Canada, GlaxoSmithKline, Hoffman-La Roche Ltd., Merck Frosst Canada, Pfizer Canada, and Schering Canada.

ACE thanks these private and public organizations.