I flew in to Denver last night from Seattle. Flight arrived just before 11, and my eyes were shot. The only thing worse than flying with my sclerals IN, is flying with my sclerals OUT, so I opted for in... but it was bad. Then it got worse. Arrived 11pm, walked what felt like miles in the airport, squinting, froze to death outside in the thunder, sleet and snow trying to connect with my Uber driver who could not for the life of him figure out which level he was on and would drive away as soon as I got in an elevator up or down, and walked into a hotel room that had air (none too warm) blowing like crazy. So glad to pry those lenses off my eyes and drop into bed about 1am.

This is actually my first time attending the Sjogrens Syndrome Foundation's national patient conference. What an event!

There are more than 450 people attending (mostly patients), and based on the show of hands during one of the introductory presentations, the vast majority have traveled in from out of state! I've spoken with several people already who have traveled to two or more of these meetings.

There's a nice exhibit hall, but some conspicuously absent companies! Oasis, where are you? Allergan, Alcon? Geez. The only ones here doling out eyedrop samples - a must at any major event for people with dry eye, after all - are Theratears, whose ads, incidentally, seem to be everywhere of late.. But Eye Eco are here, and 7Eye/Ziena. And they are both mobbed nonstop. In fact, I came planning on borrowing a corner - a small corner - of 7Eye's table, to be able to chat with people, but when I saw the deluge, I just blended in and chatted to everyone about dry eye glasses until I managed to make a break and get out of the way....

It was really great to reconnect with the Sjogrens Syndrome Foundation staff after many years! It's just amazing to me how they've grown. When I first got to know them, they were a fraction of their current size. The types of research and advocacy work they are doing these days, among other things, are just amazing.

Rebecca Petris

March 11, 2018

Case reports of Cacicol use in Sjogrens patients with superficial ulcerative keratitis

Rebecca Petris

March 11, 2018

Interesting case report on some folks with severe corneal disease. They clearly had to stay on it to get any kind of continued benefits, but those benefits sound pretty dramatic:

decreased pain, burning, irritation and FBS
improved vision
healing of diffuse keratitis (after several months treatment)

Medicine (Baltimore). 2018 Mar;97(10):e9935.
Evaluation of a new matrix regenerating agent in patients with Sjögren syndrome and superficial ulcerative keratitis resistant to conventional therapy: A report of 3 cases.
Fajnkuchen F1,2, Barritault D3, Giocanti-Aurégan A1,4.

Abstract
RATIONALE:
Sjögren syndrome (SS) is frequently associated with ulcerative keratitis, which is difficult to treat due to lacrimal tear deficiency and inflammation of the ocular surface.

PATIENT CONCERNS:
We report the successful additive effect of a matrix regenerating agent (RGTA, Cacicol) in SS patients with severe superficial ulcerative keratitis resistant to conventional therapy.

DIAGNOSES:
Retrospective, noncomparative case series of patients with primary or secondary SS associated with chronic diffuse keratitis.

INTERVENTIONS:
All patients (3 women, aged 46, 59, and 84 years) had several years of dry-eye disease history and recurrent keratitis despite having used maximal dose topical therapies including artificial tear substitutes, topical vitamin A, and cyclosporine 0.05% emulsion. All patients suffered from dry, diffuse, and chronic superficial keratitis of at least 75% of the corneal surface, with no sign of corneal neovascularization or opacity.

OUTCOMES:
RGTA treatment led to a rapid and marked decrease of ocular pain, burning, irritation, foreign body sensation, and improvement of visual acuity. Total diffuse keratitis healing occurred after several months of treatment. Discontinuation of RGTA administration led to the recurrence of severe keratitis; re-introduction of RGTA was successful. No local or systemic adverse effects related to treatment were reported.

LESSONS:
RGTA treatment was effective and safe in this small series of 3 patients suffering from SS associated with recurrent or chronic superficial ulcerative keratitis resistant to conventional therapy.

Rebecca

March 24, 2012

Abstract: Parotitis and pediatric Sjogrens Syndrome

Rebecca

March 24, 2012

FYI parotitis is infection of the salivary glands. I'm posting this one in case any of the parents of youngsters with dry eye might find it interesting/relevant... I had never heard of Sjogrens in children before.

Recurrent parotitis as a presentation of primary pediatric Sjögren syndrome.

Parotitis is a common condition seen in the pediatric population, usually as an isolated occurrence associated with viral or bacterial infection. The differential diagnosis expands when recurrent parotitis is encountered. One etiology is primary pediatric Sjögren syndrome (SS), an autoimmune condition typically associated with dryness of the eyes and mouth in adults. Pediatric patients often present with isolated recurrent bilateral parotitis, however, and we describe 4 such cases in children aged 9 to 17 years at presentation. Despite lack of ocular complaints, 3 of these patients had ocular findings on ophthalmologic exam. Our patients also exhibited classic laboratory abnormalities, including positive antinuclear antibody, SS A, and SS B antibodies; presence of rheumatoid factor; and hypergammaglobulinemia. Consideration of SS in the child with recurrent parotitis is important for timely and appropriate referral and treatment. We review the differential diagnosis of parotitis in children as well as the salient features of pediatric SS.

Pediatrics. 2012 Jan;129(1):e179-82. Epub 2011 Dec 19.
Baszis K, Toib D, Cooper M, French A, White A.
Source
Division of Pediatric Rheumatology, Washington University School of Medicine, St Louis, Missouri, USA. baszis_k@kids.wustl.edu