Sjogrens

It's all about the burning!

Another study just came out on depression and dry eye. But it's not really about depression and dry eye. (Old news.) It's about SYMPTOMS and depression, and of those symptoms, burning specifically.

Clinical signs of eye disease are the driving force behind how optometry and ophthalmology address dry eye. It's the clinical signs that drive what gets written in the chart and on the Rx pad - but it's the symptoms that drive the patients to the doctor, and failure to get relief for those symptoms that drive patients to doctors #2, #3 and #4 and at some stage into depression as well.

Dry eye patients are ruled by symptoms. (Call it pain, actually.) Pure and simple. We do not sink into clinical depression because of our TBUT, osmolarity or meibography scores or our ocular surface staining. We are driven there when we do not get relief from the unremitting burning sensation in our eyes. (It's not a hard concept to understand; sit there with your eyes open for 60 seconds and extrapolate that to "all day" and see how that prospect suits you.)

Eyecare professionals, we need you to listen, and not get so distracted by what you are, or, even more likely, are not seeing under your slit lamp that you fail to see the big picture needs of the patient seeking help. 

Industry and FDA, we need you to listen and not get so hung up on the near impossibility of improving both signs and symptoms that you lose the bigger picture of the NECESSITY of bringing symptom relief to market.

Dear authors of the study linked below: Thank you, thank you, and thank you again for documenting this. We need every bit of increased emphasis on the role of dry eye symptoms that we can get, and especially that key word, "burning".

A thorough understanding of symptoms and patient goals should be driving dry eye research and dry eye treatment and management plans. It should also be playing a more central role in the FDA's dry eye drug approval process.

Am J Ophthalmol. 2018 Apr 12. pii: S0002-9394(18)30164-8. doi: 10.1016/j.ajo.2018.04.004. [Epub ahead of print]
How Are Ocular Signs and Symptoms of Dry Eye Associated with Depression in Women with and without Sjögren's Syndrome?
Gonzales JA1, Chou A2, Rose-Nussbaumer JR1, Bunya VY3, Criswell LA4, Shiboski CH5, Lietman TM1.

Abstract
PURPOSE:
To determine whether ocular phenotypic features of keratoconjunctivitis sicca (KCS) and/or participant-reported symptoms of dry eye disease are associated with depression in women participants enrolled in the Sjögren's International Collaborative Clinical Alliance (SICCA).

DESIGN:
Cross-sectional study.

METHODS:
Women enrolled in the SICCA registry from 9 international research sites. Participants met at least one of five inclusion criteria for registry enrollment (including complaints of dry eyes or dry mouth, a previous diagnosis of Sjögren's syndrome (SS), abnormal serology (positive anti-Sjögren's syndrome-related antigen A and/or B (anti-SSA and/or anti-SSB), or elevated anti-nuclear antibody and rheumatoid factor), bilateral parotid gland enlargement, or multiple dental caries). At baseline, participants had oral, ocular, and rheumatologic examination, blood and saliva collection, and a labial salivary gland biopsy (LSGB). They also completed an interview and questionnaires including assessment of depression with the Patient Health Questionnaire 9 (PHQ-9). Univariate logistic regression was used to assess the association between depression and demographic characteristics, participant-reported health, phenotypic features of Sjögren's syndrome, and participant-reported symptoms. Mixed effects modeling was performed to determine if phenotypic features of KCS and/or participant-reported symptoms of dry eye disease were associated with depression, controlling for health, age, country or residence, and gender and allowing for non-independence within geographic site.

RESULTS:
Dry eye complaints produced a 1.82-fold (95% CI 1.38-2.40) higher odds of having depression compared to being symptom-free (p < 0.001). Additionally, complaints of specific ocular sensations were associated with a higher odds of depression including burning sensation (OR 2.25, 95% CI 1.87-2.72, p < 0.001) compared to those without complaints. In both women with or without SS, the presence of symptoms of dry eyes and/or dry mouth rather than SS itself resulted in higher odds of depression. One particular ocular phenotypic feature of SS, a positive ocular staining score, was inversely correlated with depression.

CONCLUSIONS:
Participant-reported eye symptoms, particularly specific ocular sensations such as burning, were found to be positively associated with individual American College of Rheumatology/EUropean Union League Against Rheumatism (ACR/EULAR) SS criteria items.

SSF (Friday afternoon, 3/3)

Steve Cohen, optometrist in Scottsdale AZ and SSF's Chairman of the Board, gave a talk next on what's new in Sjogrens dry eye. A talk.... peppered plentifully with slides titled "Points to Ponder" such as "What was the best thing BEFORE slided bread?" and "If love is blind, why is lingerie so popular?" Anyway. Dr Cohen didn't waste too much time on dry eye 101 type basics, sprinting pretty quickly through ADE vs EDDE and diagnostic tests (with brief digressions on diet - he too is a fan of diet to minimize inflammation - and on the too-often overlooked visual blurring that comes with dry eye.

He talked about most of the pieces that can go into a personalized treatment plan, including:

  • lid hygiene

  • omega 3

  • lifitegrast

  • OTC lubricating drops

  • steroids/nsaids

  • antibiotics

  • warm compresses

  • punctal plugs

  • cyclosporine

  • water intake

  • corneal bandage

  • orbital shields (only, this was in the presentation but he didn't talk about it, mental note to ask him what he meant! Moisture chambers? Something totally different?)

  • lipiflow

  • autologous serum

Incidentally, ALL eye doctors treating someone for dry eye ought to have a list at least that long that gets discussed with their patient - as opposed to just plugs and drops - so their patient knows the rationale of what they're doing.

On artificial tears, he sounds like a pretty big fan of Systane Balance (was involved in trials) and also mentioned a recent study of a Rohto drop in Sjogrens patients. Must get link... I've been searching and haven't found it yet. Thankfully, he warned AGAINST the use of redness reliever drops, but did mention that they're using Alphagan P, diluted in artificial tears, off label and occasional use only, for eye whitening. 

On water intake, he said the new guideline is 1oz daily per 2 lbs body weight. Mentioned phone apps to track your water intake. 

On supplements, he mentioned the disappointing results of the DREAM study being presented back east today (in fact I got a tweet from a friend about that just an hour or two before). This was an extensive study with a large cohort, and it failed to show any difference between omega 3 supplementation and placebo, in this case, olive oil. But hey, maybe there's something to olive oil we haven't tapped yet! He advocates for PRN and Nordic Naturals, as you should use triglyceride form of Omega 3s for maximal absorption.

I was glad to hear him advocate Tranquileyes as well.

He talked about amniotic membrane treatments Prokera and Ambiodry a bit (prefers the former).

He went over plugs, but suggested testing first with inflammadry because of the concern about retaining too many inflammatory cells on the cornea.

He went over several practical tips on computer use - keeping the screen low so eyes aren't open as wide; angling the screen slightly for less glare; and following the 20/20/20 rule

Hypochlorous acid was up next. He's a Avenova fan - until their disillusioning move of going Rx and high priced, and now recommends Ocusoft's HypoChlor because the pricing is so much better. I was glad to hear him talk about lid scrubs, including the above but also Ocusoft wipes, rather than baby shampoo because of the studies that have shown it has some negative effects alongside the benefits. 

Then Lipiflow, Blephex, dry eye friendly contacts, scleral lenses and serum drops... it really was a very through and well rounded presentation. I was so glad to hear sclerals included. I think that's more likely, in general, in optometry talks than ophthalmology talks, which is unfortunate.

I got chilled in the conference room and had to disappear after that for awhile so I missed Steve Taylor's talk about the state of Sjogrens and work that's being done. But, it's been a great day.

SSF (Friday afternoon, 2/3)

Friday's talks opened with Chadwich Johr, rheumatogist at UPenn's Sjogrens Center, who gave the traditional overview of Sjogrens, in anything but a traditional manner. A very polished, entertaining and effective presentation. He started off by pointing out the difficulty of presenting to groups like this because you've got everyone from the newly diagnosed to the hyper-self-educated veterans that endlessly ask impossible questions.

A lot of his talk centered on the process of diagnosing Sjogrens, and breaking down what that looks like to a rheumatologist, all the things they take into account, and how the picture may look very different for each individual. He walked through a chart of 4 items (clinical signs of dry eye, ditto of salivary gland dysfunction, lab testing - SSA+ - and lip biopsy) and talked about how as long as there are any 2 or more of those including proof of autoimmunity, they are diagnosed with Sjogrens. He talked about how diagnosis is never exclusively symptom based and that there are in fact many other things that can cause the same symptoms. 

Dr Johr introduced a couple of Sjogrens scoring systems:

  • 2016 ACR-Eular Sjogrens Classification Critera: Schirmer+ i1 point, staining 1 point, "spit test" 1 point, SSA (Ro)+ 3 points, lip biopsy + 3 points.

  • ESSDAI (Eular Sjogrens Syndrome Disease Activity Index), which breaks systemic features of Sjogrens down by domain.

Other topics included lymphoma risk factors, neuropathy, and biologic drugs.

Dr Johr fielded many questions afterwards. Both marijuana and diet were brushed aside pretty quickly, but the latter - diet - was picked up again just as quickly afterwards by Steve Taylor, CEO of the Sjogrens Syndrome Foundation, who emphasized how very important they consider diet especially as an area for research in Sjogrens.