The amount of information that is becoming available is vast. In a recent SSF meeting in USA  there were 10,000 (TEN THOUSAND) Rheumatologists and researchers in attendance. Sjogren’s is continuing to receive considerably more recognition and attention from practicing reheumatologists and researchers as well as potential corporate partners looking to develop clinical trials and biologic therapies for Sjogren’s. Springing from this research and knowledge and hopefully as we gather screen and learn, a solution will come.

 However back in the real world every day people have to put up with the daily problems that is bought on by SS.  The same old  problems of almost shouting and still not being heard continue.  GP’s are often pressured and have at best a scant appreciation of what is going on.
Yesterday a pleading call from a dear friend, not just a member of the Sjogren’s Society. Who is prescribed large pills (in size) from her GP and in swallowing they get stuck on the throat wall and yes she can still feel the spot days later.  
This has prompted a slight ‘split’ in our focus.  Over the past decade we have noted the same comments comming back from many speakers. They get a deeper appreciation  when they hear the problems first hand.  I am planning a few meetings just for GP’s and Rheumatologists. Maybe to dentists as well.
How this will pan out is not quite decided, but the ‘germ has sprouted’. Please continue to take information, brochures and newsletters to your doctor, even if discarded it has sown a seed-a reminder that Sjogren’s exists and there is a Society that is interested in those suffering.
Therefore  it is up to us, this includes all members, your partners and even friends and family if you can rake them in. Little voices can be heard if repeated enough times, so go fly the Sjogren’s syndrome  banner.

Also we may be able to fit in a series of one-day meetings in smaller centers so that this message can get to all SS members. Yes, there are plans afoot.  
This has become a plausible concept as we now have some funds. Costs overtook us for  some time and despite a deep desire to keep the membership fees and meeting costs low, it just compounded resulting in funds so low that we did not have enough to post out more than one, perhaps two newsletters per year.  Personally there have been a few disruptions over the past three or four years that have precluded our self-funding such ventures.

This is healthier now and this gives more flexibility and hopefully some exciting new approaches.
Commercial support can also be looked at too but only when we have something of commercial value.
 Each month I receive a series of abstracts and as I scan these I note that the bulk of them are about Diabetes. All sorts of research, but little on even Lupus,  Scleraderma and hardly a mention about Sjogren’s syndrome.   So we have to go searching  mainly in the dedicated Sjogren’s sites.
On the research front there is some information and that is really not greatly changed since
Dr Rushton went to France  I think 4 years ago.

David Zimmerman (Hon President)
(extract from Dec 2012 Newsletter)

This year we had three wonderful speakers. Peggy Chen a Rheumatology Registrar here for a short while from USA  working at the Manukau Superclinic with Dr Rushton.  
A second of Dr Rushton’s colleagues was Dr Zahoor Ahmad  an ENT surgeon  Dr Zahoor also works at the Superclinic and is in private practise.
The last speaker was Simon Dean  Opthalmologist  CMDHB*/ Private Practice Eye Institute. Auckland and Manukau [Read more…]

Some comments from Dr David Zimmerman (Hon President)
(extract from Dec 2012 Newsletter)

Sponsorship was hard-won this year and amounts given by various firms was well down on previous years and reflects no doubt the harder financial times.  As so many members are on fixed incomes this is doubly hard as costs go up, despite the buoyancy of the Auckland property market.

Below is the abstract from a Lancet article and while the diagnostic process is one we are familiar with, I note that the  pattern of membership is changing with what seems to be a much younger  group coming on board. I suspect that these are people where the disorder starts, perhaps in puberty and manifests in mid to late 20’s, finally forcing them to seek help at 30-ish. This new variant does not show  up positive on lip biopsy. So the fall-back position is blood tests.

However the underlying issue is to find out the mechanism that drives these disorders. Speaking to Dr Chen, I did understand that there is an immunoglobulin that hides deep in the glands and is difficult to get at. This encourages the protective cells to go and dig it out thus filling the glands with unproductive cells effectively blocking the gland.

Therefore I understand the key is to find what the initial trigger is and how to switch it off.

Sjögren’s syndrome

Robert I Fox

Sjögren’s syndrome is a chronic autoimmune disorder of the exocrine glands with associated lymphocytic infiltrates of the affected glands. Dryness of the mouth and eyes results from involvement of the salivary and lacrimal glands. The accessibility of these glands to biopsy enables study of the molecular biology of a tissue-specific autoimmune process. The exocrinopathy can be encountered alone (primary Sjögren’s syndrome) or in the presence of another autoimmune disorder such as rheumatoid arthritis, systemic lupus erythematosus, or progressive systemic sclerosis. A new international consensus for diagnosis requires objective signs and symptoms of dryness including a characteristic appearance of a biopsy sample from a minor salivary gland or autoantibody such as anti-SS-A. Exclusions to the diagnosis include infections with HIV, human T-lymphotropic virus type I, or hepatitis C virus. Therapy includes topical agents to improve moisture and decrease inflammation. Systemic therapy includes steroidal and non-steroidal anti-inflammatory agents, disease-modifying agents, and cytotoxic agents to address the extraglandular manifestations involving skin, lung, heart, kidneys, and nervous system (peripheral and central) and haematological and lymphoproliferative disorders. The most difficult challenge in diagnosis and therapy is patients with symptoms of fibromyalgia (arthralgia, myalgia, fatigue) and oral and ocular dryness in the presence of circulating antinuclear antibodies.    Lancet 2005; 366: 321–31

Rheumatology Clinic, Scripps Memorial Hospital and Research Foundation, La Jolla, CA 92037, USA
(R I Fox MD)
Correspondence to: Dr Robert I Fox, Rheumatology Clinic, 9850 Genesee Ave, #910, La Jolla, CA 92037, USA
bobfox@adnc.com

Anti-SSA (RO) is common, but is only found in 70% of patients finally diagnosed with an autoimmune disorder. Conversely  13.8% of a USA population was found to have this, far higher than Sjogren’s in the population, so for us it is helpful, but not diagnostic.  What things might add to or facilitate such a disorder.  How about smoking?  Nope! Neither is C-reactive protein, which is associated with inflammation. So this appears to be more linked to the interferon pathway.

AntiSSA (RO)  it may be helpful, but it’s not diagnostic, so that begs the questions… what is diagnostic? This illustrates the inadequacy of our diagnostic tools and therefore understanding of the disorder and a pathway to treatment.

Where to then… my fallback position is medieval. If it looks like a horse, neighs and eats hay, it’s probably a horse, so treat accordingly and watch the results. However this information was not available a few years ago. So hopefully it will lead to more answers

 With the destruction I see dentally, every step is urgent, the cost of delay and lack of control is high, financially, physically and emotionally, hence the need to focus funds on research where the best chance of a result is likely.