JointHealth™ insight   December 2004/January 2005

The next two issues of JointHealth™ monthly are co-written by Jay Fiddler and Otto Kamensek, members of the Arthritis Research Centre of Canada's Consumer Advisory Board, and Cheryl Koehn, President of Arthritis Consumer Experts. They will highlight just three of the thousands of topics presented at the American College of Rheumatology (ACR) 2004 Annual Scientific Meeting.


What it's like to go to the world's largest scientific meeting on arthritis

To help ACE community members and the public gain better insight into what the American College of Rheumatology Annual Scientific Meeting is all about, we asked Jay Fiddler and Otto Kamensek of the Arthritis Research Centre of Canada, and Cheryl Koehn, president of Arthritis Consumer Experts, to share their personal thoughts on their attendance at this year's meeting.

Jay Fiddler:
"This was my first experience attending the American College of Rheumatology (ACR) Annual Scientific Meeting and nothing could have prepared me for the overwhelming nature of this event. Ten thousand people, all in San Antonio to present, talk about and discuss arthritis research - I was excited!

Although I attended dozens of talks over the five day meeting, my personal favourite was a "Meet the Professor" session entitled "Stills Disease and Febrile Syndromes" by Dr. John J. Cush. As a person living with Stills disease, I was very excited to take part in this session. There is so little information and research about the disease publicly available that. . .

At the end of the five days, I left knowing a lot more about my own illness and how to be better prepared for a conference of this size. Next time I would have comfortable shoes, water, food snacks, and layered clothing to help when going from air condition environments to the hot, humid outdoors. However, I am now armed with knowledge that I can use to further educate my own health professionals and those within my community. Living well with arthritis requires a team effort and a ton of knowledge -I have added to both!"

Otto Kamensek:
"As a first-time attendee of the American College of Rheumatology Annual Scientific Meeting I can best describe my experience as eye-opening and rewarding. I must admit to a slight case of "Brain Overload" as I wasn't prepared for the sheer volume of information and the many areas of research that were featured.

Taking the time to plan one's itinerary in advance of the meeting definitely makes traversing the convention centre maze more manageable. I did receive a few glances from some of the conference attendees, perhaps because only a small number of people with arthritis were at the conference - not because they are not welcome, but because the meeting is expensive to attend.

I attended a one-day workshop on inflammatory arthritis that focused on depression and other forms of distress, and function and disability. After only one full day of the conference, I was mentally and physically tired, but excited about the days to follow.

Read about this workshop in the February issue of JointHealth™.

Cheryl Koehn:
"This year marked my sixth American College of Rheumatology Annual Scientific Meeting - and I found it as exciting and informative as the first. As a person living with rheumatoid arthritis, I couldn't help but sit in the thirty-five or so sessions I attended and reflect back on the scientific progress I had witnessed over the past six years.

It was also very sobering to realized that the research community is still quite a distance from the finish line - the one where all of the mysteries about the over 100 different types of arthritis are unraveled. Researchers seem to be just scratching the surface of areas related to cause and treatment, not to mention all of the many unknowns about how people living with arthritis make decisions about their health care and how they live successfully - and unsuccessfully - with their disease.

One of the most exciting "key messages" I walked away from the meeting with was "Physical Activity = Pain Relief". More and more, researchers are finding out that physical activity (or "exercise") is very beneficial for people with all kinds of arthritis. This is important news to get out to the arthritis community because people living with arthritis want to do more than just take medicine. They want to know what they can do in their own home or community to stay as able bodied as possible.

The other thing that amazed me (even after six years) was how hard folks work at the meeting. Attendees are in sessions from 7:00 am until well into the evening - some sessions or meetings go until 10:00 pm. And it was extremely gratifying to see Canadian researchers, rheumatologists and allied health professionals (physio- and occupational therapists, psychologists, etc.) leading a number of marquee presentations and workshops.

Overall, attending the meeting was yet another terrific learning opportunity, one that I look forward to sharing with JointHealth™ readers again next year.

If you would like to read about ACE's consumer report from the 2003 ACR meeting, visit: click here


Challenges in diagnosing early osteoarthritis

Osteoarthritis (commonly referred to as "OA") is the most common form of arthritis disease worldwide. It is a painful, usually slow progressing disease that affects the joints, particularly the hips and knees. As the disease progresses, one's ability to move their joints through a full range of motion decreases and pain increases.

The most common myth about OA is that it is a disease of older persons. Nothing could be further from the truth. Any person over the age of 15 is at risk of developing OA and some people in their 90s don't have any OA. So, OA is not inevitable.

Currently, approximately 3 million people in Canada have OA. Pain causes fatigue and reduces one's energy needed to carry out daily activities, both physical and mental. Work - whether inside or outside the home - and interpersonal relationships with family and friends, co-workers and clients are affected by fatigue. No matter what one's activity use to be, it decreases as pain and fatigue increase. With all of this, one's self-esteem is affected as well. A great deal of research is being done to develop new treatments for OA. As with every other type of arthritis, starting treatment early is often the best way to have the most benefit. So, being able to diagnosis OA early is key to decreasing pain, joint damage, and improving and maintaining a quality of life with family, work and the community in the future.

Early diagnosis is a challenge for medical experts as highlighted at the American College of Rheumatology Annual Scientific Meeting, November 2004, in San Antonio, Texas. This meeting is the premier arthritis science meeting of the year, attracting medical experts from around the world. Dr. John Esdaile, Scientific Director of the Arthritis Research Centre of Canada, was invited to present on the challenges involved in early diagnosis of OA. His talk focused on a very important theme: identifying and treating OA as early as possible is critical in providing an effective, holistic treatment plan that helps to maintain joint health. This is a challenge for both health care professionals and for people living with early OA.

Dr. Esdaile highlighted that very often, people living with early OA do not go to their family doctor to report the pain and physical limitations. The complaints can be intermittent and seem too mild to "bother" the doctor about. The person affected may attribute the complaints to a temporary sprain or strain rather than the early warning sign of a real arthritis. This is especially true for people who view themselves as being "too young" to have arthritis. Compounding this is that often family doctors do see a great many patients with a lot of sprains and strains have no way of separating these from the complaints of early OA until the OA is fairly well established and joint damage is already done.

Unfortunately, for OA involving the hip and knee one cannot see with the naked eye the early damage caused from arthritis. If doctors knew what and how to look for symptoms of early OA, a prevention and/or treatment plan could be started much earlier in a person's life - possibly before OA joint damage occurs.

An important point from Dr. Esdaile's presentation was that consumers/patients should be taking an active role in maintaining their joint health by reporting changes they notice in their physical abilities to their family doctor. One example of a symptom that people do not tell their doctor about is groin or upper thigh pain. Often, groin pain is an early symptom of osteoarthritis, but many doctors and their patients write it off as some sort of strain or injury.

Dr. Esdaile reported that scientists are looking for ways to separate the people who really have only strains and sprains from those with similar complaints who have early OA. Areas of active research for tests include the following:

  • Blood and urine tests that might detect early OA. These include: (1) biomarkers (a distinctive, usually biochemical "pointer" found in the body) which result from the release of small fragments of cartilage or bone, some normal and some abnormal, which are caused by the earliest changes of OA. Some of these tests may also predict who will get OA that will progress rapidly; (2) Early OA may be linked to an increase in inflammation. Tests, such as C-reactive protein, a marker for inflammation, may increase in OA; (3) Early OA may release substances that interact with the body's immune system. This system then produces antibodies or immune cells that react with cartilage. The resultant antibodies or immune cells can be measured.

  • Radiology tests to "see" the OA earlier than conventional X-Rays, as unfortunately by the time a regular X-ray is abnormal considerable OA damage has been done. These include: (1) Scintigraphy (a two dimensional scan or picture with a chemical that is attracted to bone) that shows damage to the bone just below the joint cartilage. This change occurs early in OA; (2) MRI (magnetic resonance imaging) can find early change to the cartilage and the bone that are due to OA; (3) d-GEMRIC MRI is the very newest type of MRI and currently is only used in research laboratories. But, it can find cartilage that appears normal on a regular MRI, but is actually showing early chemical change that will lead to OA.

There are also the beginnings of research into new treatments to slow the progress of OA. These include the popular over the counter drug, glucosamine, as well as doxycycline, diacerin (available in Europe) and vitamin D. None have been definitively proven to work, but these and other novel agents are under intensive study.

The Arthritis Research Centre of Canada is currently conducting a number of projects for research into osteoarthritis. Dr. Jolanda Cibere from the Arthritis Research Centre is collaborating with scientists at McGill, the University of Toronto, the UBC Centre for Hip Health and the University of Queensland to study early knee and hip OA. This study involves developing a standardized way of evaluating the hip and knee, standardized procedures for x-ray and MRI (magnetic resonance imaging) tests, and measurement of the blood and urine markers described above. The overall goal of the study is to provide scientifically sound ways to detect osteoarthritis early and determine which people will get more severe OA so that the new therapies being tested can be used early to halt or reverse joint damage.

While it may be a ways down the road, it is exciting to think that research being done in Canada may make joint replacements due to osteoarthritis a thing of the past.

To learn more about this and other research projects at the Arthritis Research Centre of Canada, click here. To read about osteoarthritis research in Canada, click on OsteoArthritis & You, in the lower right corner. This newsletter is produced four times each year and is available both on-line and in print version, both in English and French. To subscribe: contact Paul Clark, Research Coordinator, at:

phone: 604.871.4570
or by mail: Arthritis Research Centre of Canada
895 West 10th Avenue
Vancouver, BC V5Z 1L7


Adult Still's disease

Adult Still's disease (or "Still's disease) is a rare form of inflammatory arthritis, so much so that even rheumatologists can have a difficult time making the diagnosis. At the American College of Rheumatology Annual 2004 Scientific Meeting an entire workshop was devoted to the topic. The workshop, led by Dr. John Cush from the University of Texas, provided an excellent overview on a disease that affects only 1 or 2 people per million every year - the vast majority being young adults between the ages of 16 and 35.

Interestingly, finding one's way to a diagnosis of Still's disease is not about finding a specific or defining symptom. Rather, it is a process of ruling out other illnesses or diseases, thus leaving Still's disease alone on the list of possibilities. But even though diagnosing this rare disease is a process of elimination, there is a group or "constellation" of common signs and symptoms that lead the physician to suspect Still's disease.

Dr. Cush provided the workshop attendees with a list of the major external signs and symptoms he sees in his patients with Still's disease. The most significant and common symptom is a fever of 39°c or higher that occurs once a day (or occasionally, twice a day) at about the same time each day. After the fever peaks, it then returns to below normal. Dr. Cush stated that although "rarely is a fever pattern diagnostic", it is in the case of a few illnesses, including Still's disease, and close attention should be paid to this finding.

Another characteristic finding is the pink salmon coloured rash that often appears with the fever spike and is most commonly found on the chest, abdomen and back. It is so typical of Still's disease that it is called a Still's rash.

Other common signs and symptoms are:
  • sore throat
  • joint pain and swelling
  • chest pain on deep breathing
  • weight loss
  • muscle pain
  • swelling of the lymph glands, liver or spleen).
As one can imagine, with this many symptoms for the physician to investigate, it is easy to understand why a number of other diseases have to be ruled out in order to accurately diagnosis Still's disease.

Also, certain laboratory tests are helpful. Common abnormalities include:
  • a very high white blood cell count
  • anemia (a low red blood cell count)
  • very high markers of inflammation, especially ferritin.
Other illnesses/diseases that share some or all of the symptoms listed above include:
  • Infections such as hepatitis, rubella (German measles), mononucleosis, and HIV/AIDS
  • Infective endocarditis (an infection of the heart valves)
  • Tuberculosis
  • Lyme disease (a type of arthritis which is transferred by deer ticks)
  • Cancer (including leukemia and lymphoma)
  • Connective tissue disease, such as SLE (lupus).
Dr. Cush spent a significant amount of time during the workshop reviewing the signs and symptoms and various lab tests that help the physician to make a correct diagnosis of Still's disease. Like other types of inflammatory arthritis (e.g., rheumatoid arthritis), a delay in diagnosis, and thus treatment, may contribute to more severe joint damage, the need for joint surgery earlier on in the disease course, and greater disability.

Once a Still's diagnosis is in hand, the physician and patient can begin making decisions around medication treatment. Dr. Cush gave a brief overview on the types of medication that are used to treat Still's disease. He touched on the use of biologic response modifiers or "anti-TNF" medications such as etanercept (Enbrel®) and infliximab (Remicade®), but focused mainly on the role of IL-1 medications, [interluken-one, a substance involved in inflammation] such as anakinra (Kineret®) which is an IL-1 receptor antagonist. Given that Still's disease is quite rare, there have been only a few reports of individual cases about the use of IL-1 receptor antagonist. A randomized control trial (the most common type of research study investigating whether a medication works) has not yet been done.

Dr. Avril Fitzgerald, from the University of Calgary, presented a poster on Still's disease at the scientific meeting comparing 4 people treated with anakinra to two who were treated with an anti-TNF medication. The results: The four treated with anakinra did significantly better than the two treated with the anti-TNF, leading her to conclude that IL-1 is an important cause of the inflammation in Still's disease. Dr. Cush and other rheumatologists worldwide agree with this conclusion.

The big "take home messages" from the Still's disease workshop were:

  • Through careful examination of numerous symptoms, physical examination results and tests, as well as a process of eliminating other potential illnesses or diseases, the skilled physician can diagnose Still's disease in a timely manner;

  • Timely diagnosis is critical to helping patients and their physicians make decisions about a treatment plan and catch the disease early and thus minimize the chance of joint damage and resulting disability;

  • IL-1 plays a major role in fueling Still's disease and anakinra may be a helpful medication for severe forms of the disease.

For more information on Still's disease, click here


Community FAQs

Are there any new medications for rheumatoid arthritis?

The most common question asked at ACE Plan to Win with Inflammatory Arthritis workshops is, Are there any new medications available to treat inflammatory arthritis? We are pleased to provide you with a "yes".

Since our last Plan to Win with Inflammatory workshop in Fall 2004, one new biologic response modifier received Health Canada approval, and one other that was already on the market received two new indications - meaning, the medication was already approved for one type of disease, but received additional approval for use in two other diseases.

Product name
(brand name)
Date of Health Canada approval Used to treat
September 24, 2004 rheumatoid arthritis
September 29, 2003 juvenile rheumatoid arthritis
(new indication)
January 8, 2004 psoriatic arthritis
(new indication)

One other biologic response modifier, infliximab (Remicade®), is currently under review by Health Canada for use in ankylosing spondylitis. If approved, this would be the first new treatment for ankylosing spondylitis to be developed in decades - very promising news.

ACE Consumer/Patient Survey on NSAID Use in Canada

Thank you to everyone who participated in the NSAID survey in the October/November issue. We received over 100 responses over a two week period. The results will be shared with you and the arthritis community in the February 2005 issue of JointHealth™ monthly.

Over the past 12 months, ACE received unrestricted grants-in-aid from: Abbott Laboratories Ltd., Amgen Canada / Wyeth Pharmaceuticals, Bristol-Myers Squibb Canada, GlaxoSmithKline, Hoffman-La Roche Canada Ltd., Merck Frosst Canada, Pfizer Canada and Schering-Plough Canada, UCB Pharma Canada Inc. ACE also receives unsolicited donations from its community members (people with arthritis) across Canada.

ACE thanks these private and public organizations and individuals.