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IXth International Symposium on Sjögren’s Syndrome
Washington DC, 27-29 April 2006


Washington is a long way to go from the Netherlands for a Sjögren’s meeting, but this was a special occasion: the IXth International Symposium on Sjögren’s Syndrome, a unique scientific event held only every three years, and consequently well worth the lengthy travel and the long, intensive symposium days. This 2006 symposium, chaired by Philip Fox DDS,  was hosted by the American Sjögren’s Syndrome Foundation (SSF) and attended by around 300 delegates from around the world, twice the number that attended the previous symposium in Japan and an indication of the increasing global interest in this disease which is just as enigmatic as painful bladder syndrome/ interstitial cystitis. Since PBS/IC may be associated with Sjögren’s syndrome, this symposium was of special interest to the International Painful Bladder Foundation.

Dr Philip Fox, Chairman of the IXth International Symposium on Sjögren’s Syndrome

The Sjögren's Syndrome Foundation team
Sjögren’s syndrome

Sjögren’s syndrome is a complex autoimmune disorder and its manifestations are both organ-specific (e.g. eyes and mouth) and systemic or generalized and may in some patients include symptoms in the urinary bladder. It is consequently a multidisciplinary disease involving all kinds of specialists (ophthalmologists, ear, nose & throat specialists, dental & oral specialists, rheumatologists; immunologists; gastroenterologists; neurologists; urologists, nephrologists and more besides). Under normal circumstances these different specialists would probably have little contact with each other. However, this international symposium gives them the opportunity to meet, network, discuss and compare their research and studies. One ophthalmologist who regularly treats Sjogren’s patients told me that he had come to the symposium because he knew nothing about Sjögren’s other than the eye problems and felt he needed to know more so as to understand the problems of his patients better. This underlines the difficulties involved in treating patients with generalized autoimmune diseases who are sent from one specialist to another and these specialists often treat (and understand) only one part of the body instead of seeing the patient as a whole person. This is also a problem experienced by PBS/IC patients with associated Sjögren’s syndrome who often find that treatment given for their PBS/IC exacerbates symptoms of the Sjögren’s syndrome and vice versa. Specialised clinics with coordinated care are the only solution to this.

This was a highly scientific symposium with most attention focused on research rather than clinical aspects! Doctors and researchers from around the world presented the results of their research, much of it long-term ongoing research and mostly exceedingly complex such as the presentations on genetics aimed at defining the genetic risk factors in Sjögren’s syndrome. One study presented concluded that a family history of autoimmune disorders represents a risk factor for SS and that there could be a genetic predisposition. It is believed, however, that both genetic and environmental factors may play a role in triggering SS, probably a combination of both. A centre in Greece has been studying the role of viruses in triggering Sjögren’s syndrome. The preliminary data look interesting but further research is needed. However, these findings were contradicted by a poster presentation by another group of investigators.

Since much more research is done in the more common fields of rheumatoid arthritis, systemic lupus erythematosus and type 1 diabetes, scientists are examining how new insights into these diseases might also be applied to Sjögren’s syndrome and lead to more rapid progress in defining the genetic risk factors in Sjögren’s syndrome.

Much research is being done into possible biomarkers in saliva and tear fluid that will allow doctors to diagnose SS non-invasively. Identification of new genetic and molecular markers may lead to the development of better diagnostic and prognostic tools, including the systemic complications. But further studies are needed using much larger patient groups.
One of the panel discussions concerned similarities and differences between primary and secondary Sjögren’s syndrome and related autoimmune diseases and a number of posters were presented on these themes.
Research in Australia into autoantibodies against muscarinic receptors has shown that although anti-M3 muscarinic receptors (M3R) antibodies occur in a significant number of patients with primary and secondary SS, their disease prevalence, relationship to sicca symptoms and role in parasympathetic dysfunction of the urinary and gastrointestinal tracts remain unclear.
Very little interest apparently by rheumatologists in the lower urinary tract. Whenever the speakers listed systemic symptoms, they included kidneys but failed to mention bladder problems such as overactive bladder and painful bladder syndrome/interstitial cystitis which are known to be associated with Sjögren’s syndrome. Two speakers from Australia touched on the subject. For the rest, the bladder was ignored.

One session was devoted to the question: why does Sjögren’s syndrome primarily affect women? This has been linked to two general factors: the first is the striking, sex-related difference in the immune system. Women have a more potent systemic immune capability than men. This increased immune activity is believed to contribute to the much greater frequency and severity of many autoimmune diseases in women. The second factor is the different action of sex steroids on the immune system. Androgens and estrogens exert a significant influence on the development, expression and activity of immunity in both health and disease. Sex hormones acting directly or indirectly on immune cells have been claimed to be the cause of the differences between the sexes. There was a discussion about the disease changes experienced by women during pregnancy. No final answers yet, but a very fascinating field of research.

In the many debates and panel discussions, it was particularly interesting to observe how some researchers were convinced that the clues to the cause of Sjögren’s syndrome lie in very specific, sometimes microscopic abnormalities while others argued vehemently that this approach is too simplistic and that the problem is systemic and affects multiple aspects of the entire body. So clearly nobody yet knows.

A poster on the effects of exercise on aerobic capacity and fatigue in women with primary Sjögren’s syndrome concluded that their findings support the use of appropriate aerobic exercise in the treatment of primary SS. This may indeed make some SS patients gasp in amazement! When you are unable to find the energy to walk upstairs, get as far as the supermarket or do the most minor household tasks, the idea of aerobic exercises sounds rather far-fetched. An Australian researcher came up with the unusual idea that daytime fatigue in SS patients could in many cases be caused by sleep apnoea, due to dryness in the upper airways. Another speaker discussed fatigue in more detail and spoke about two types of fatigue: physical and mental fatigue accompanied by the so-called brain fog with which many patients will be able to identify. She said that patients with SS have reduced health-related quality of life and that fatigue is associated with impairment of quality of life, reduced social activity, increased sick leave and early retirement.  This presentation concluded that the pathophysiology of fatigue is still unclear and not explained by systemic inflammation. Valid and reliable measurement instruments for fatigue and systemic disease activity are urgently needed to allow evaluation of treatment strategies. A poster on fatigue in PSS concluded that fatigue is common in patients with Sjögren’s syndrome but fatigue is not associated with severity of sicca symptoms or antibody status.


A poster was also presented on cognitive deficits in primary Sjögren’s syndrome (PSS) which concluded that neurocognitive dysfunction is common among patients with PSS, with decreased verbal IQ in addition to problems with verbal memory.

Dr F. Spijkervet, who presented the poster of a study from several departments at Groningen University Medical Centre, Netherlands on the advantages of parotid gland biopsy compared to labial biopsy in the diagnosis of patients with primary Sjögren’s syndrome, explained that, from the patient point of view, studies have shown that some patients who undergo a lip biopsy have permanent functional after-effects (e.g. sensory loss at the site of the biopsy). This is particularly a problem in the mouth since it is a place where patients will constantly be aware of this effect. None of the patients who underwent a parotid gland biopsy in Groningen had experienced functional after-effects. From the point of view of researchers, the advantage is that in addition to a lesser risk of sensory impairment repeated studies can be performed on tissue and saliva from the same gland. This is not possible with biopsies on the very small salivary glands in the lip. These studies can show what is taking place in the gland of a patient. For example, it is possible to measure the function of the gland to see how much saliva the gland is producing and also to see the exact chemical composition of the saliva. The poster study concluded that a parotid biopsy has a diagnostic potential comparable to that of a labial biopsy in the diagnosis of PSS. The parotid biopsy may have additional value for early detection of malignant (MALT) lymphoma.
A study from Japan into the use of lissamine green rather than rose bengal for the diagnosis of Sjögren’s syndrome concluded that lissamine green created far less irritation and cytotoxicity to the eye and cultured cells than rose Bengal. Furthermore, lissamine green showed the best staining quality and was thought to be a very useful dye for detecting the ocular surface disorders of SS. The researchers recommended its use instead of rose bengal.
Diagnostic criteria constantly evolve and are never perfect. An American research group explored a set of criteria for primary Sjögren’s that included extra-glandular manifestations as well as glandular symptoms. Further study is required with much larger groups of patients.
Several posters were presented on anti-CD20 monoclonal antibody (rituximab), a treatment currently undergoing trials for Sjögren’s syndrome. Rituximab targets the CD20 antigen found on the surface of B lymphocytes. This drug is administered in the form of infusions. Findings indicate that it might be effective in primary SS but that associated side effects need further evaluation. Larger controlled trials are needed.
The Sjögren’s International Collaborative Clinical Alliance (SICCA) is the first registry and clinical data-specimen repository on Sjögren’s syndrome, currently funded by a five year contract with the American National Institutes of Health NIH). This international SS databank has been set up with the aim of collecting standarised information on a cohort of many thousands of patients and will ultimately allow common threads to be seen. The clinical data and specimens (saliva, blood and lip salivary glands) are being collected centrally and will be available for researchers with NIH-funded projects on Sjögren’s syndrome.
From the point of view of the bladder, there was little doubt that while we have succeeded in raising awareness among many urologists in the association of PBS/IC and Sjögren’s syndrome, we still need to do a lot of work raising awareness and interest among rheumatologists and other specialists with regard to symptoms in the lower urinary tract. Plenty of attention is paid to the kidneys, but little or none to the bladder.
One conclusion from the symposium as a whole was that there is still relatively little attention being paid to Sjögren’s syndrome and that both patients and doctors need to do their utmost to increase awareness. Much more attention is paid to other rarer diseases with far fewer sufferers. Research is being done in many countries, but it may take some time before any real, positive results are seen. It was stressed that it is vital to get younger doctors interested in SS in order to ensure continuity when the older experts retire. Symposium chairman Dr Philip Fox said that he was particularly happy that many young doctors were having the chance to present their work at the international symposium this year since this would ensure continuity for the future.
His final conclusion: “We are now getting a much deeper understanding at a molecular level of the underlying mechanisms of the disease and we are also attracting a much broader audience of researchers to the field which will only be positive for progress in research.”
The next international symposium will be held in Brest, France in 2009.
International patient meeting

On the Friday morning a meeting, chaired by CEO Steve Taylor, was organized between the Sjogren’s Syndrome Foundation (SSF) of the United States and representatives from a few international patient support groups: from Canada, United Kingdom, Japan and the Netherlands, with doctors representing Argentina and Germany. There was a discussion about the activities of each support group and the cultural differences in different countries. It was agreed that the Sjögren’s Syndrome Foundation would act as a central point for international contact between patient organizations. This role will be further developed in the coming period.

The patient meeting
Jane Meijlink


updated 29.05.2007 14:11 © 2006-2019 International Painful Bladder Foundation (IPBF). All rights reserved.