Dry Eyes and Sjogren's from the Sjogren's Conference

[magistramarla]

Here is report number 2.
Dry Eyes      Stephen Cohen, OD

  Dr. Cohen is an optometrist from Scottsdale, Az, so he sees lots of dry eyes.  He is amazing ? an optometrist who is ?with it? enough to check for underlying autoimmune issues.

After explaining how the eye and tears work, he told us what symptoms  should alert your eye specialist to do further testing for Sjogren?s.
?   Symptoms increase as day progresses
?   Sandy/gritty sensation
?   Fatigue/heaviness
?   Transient blur
?   Itchiness
?   Dryness
?   Apparent Epiphora (reflex tearing in wind, cold)

Dr. Cohen said that blurring, or vision fluctuations, often late in the day, are often missed or misdiagnosed.  In cataracts, the blur is more consistent.    He explained all of the testing, such as the Schirmer test and Rose Bengal, with which many of us are familiar.         
Here is what we wanted to know ? treatments:                                                                                                                                                     
A. Topical     There are many products on the market, known as artificial tears.  We need to try them to see what works best for us personally.  It is important that the product remain on the eye as long as possible without blurring.  Preservatives can cause burning if they don?t evaporate quickly.  Gels are recommended for night.  He highly recommended Systane. 
                                                                           
B. Immunomodulators & Anti-inflammatories  Some NSAIDs and steroids are prescribed.  Restasis is the only prescription available now, and he seemed to like it.  It can cause burning, and the condition may seem to worsen for a while, but he urges patients to keep trying.                                                                     

C. Surgical Options:  Cautery ? permanent, Punctal plugs ? collagen, silicone and smart plug                       

D.  Contact Lenses  There are new materials and lubricating solutions that make these possible with dry eyes                                                                                                                                                                                 

E.  Oral supplements   He highly recommended fish oil and listed out supplements that contain fatty acids, viatamins A,C , E, flaxseed oil, etc.                                                                                                                 

F.  Environmental protection    These include warm compresses, lid massage, wearing wrap-around sunglasses, etc.  We were shown a good new product called Tranquil Eyes, which he liked.                     

G. New or on the horizon:  Topical Androgens to regulate quality and quantity of lipid secretions   Autologous Blood serum ? patient?s own blood is used to make an eye drop. 

This optometrist encourages his patients  to be informed and educated, find support groups, build a health care team and develop a health care mission plan.

1.   Latest treatments?  See Above
2.   Are sinus problems, nasal polyps, dry nose, etc. related?  Treatments?  Yes to all of these, also mentioned in previous presentation.

I hope that this helps some of you who are dealing with this. 
Hugs,
Marla

[irish]

Marla, I was glad to see that an optometrist who truly cares spoke to the meeting. I have a daughter in law who is an optometrist and she had just graduated when I was diagnosed with Sjogrens. She put me on restasis immediately and it certainly stopped the bad eye issues in its tracks.

She has been very aware of autoimmune issues and other diseases that are related to eye issues. She reported to me that several years ago the state optometrists convention spent a good share ot its time of sjogrens issues. Many times people don't get the in depth care from optometrists and then on the other hand there are some opthalmologists who aren't very interested in the sjogrens. It behooves us all to investigate the eye docs that we see. Ask the office staff if they see many autoimmune patients in the practice.

We need to be proactive to keep our eyes as healthy as possible. You are lucky to be able to go to a convention. I went to one several years ago in my state and it is very worth the effort. My DIL went with me and she got lots out of it also. Thanks for taking the time to document your information for us. IRish

[eyeamdry]

Irish, as you know, I've been involved with dry issues on the internet for a long time, 10 years to be exact.  What the dry eyed group has figured out is that the most likely help for dry eyes is an optometrist. I know people think that they are sooooo bad they need a real M.D.  Most M.D.'s do not know much about treating dry eyes.  There is not enough serious $$ involved for the time-consuming, low charges (relaltive to Lasik surgery) of dry eye care to make it something most don't care to get deeply involved in.  Yes, a sample or two of tears and you're sent off. 

Optometrists, on the other hand, are likely to have the whole family going to them for glasses/contacts and stay around for years as patients.  They often know more about what works for dry eye and will spend the time you need to get it under control.  I will put a sentence in here that if you have eye disease, you may need an eye M.D.  Optometrists can prescribe antibotics and other eye potients.  They cannot do surgery.  They can do plugs, not sure of punctal occlusion.

Lucy

[DragonflyC]

Lucy, that makes perfect sense to me.  My optometrist has been one of my best advocates and an excellent source of information. 

The one time I went to an opthalmologist, he was rude and dismissive.  I was only in my late twenties when I became ill, and several of the doctors I saw, including the opthalmologist, seemed to think that my concerns were ridiculous.  I know that those doctors don't represent everyone in their fields (my current rheum is proof of that!), but I'm happy with my primary eye doctor and am comfortable leaving the care of my eyes in his hands.  I feel lucky to have him as a member of my treatment team.




Marla, these reports are AMAZING!!!  Thank you so much for taking the time to report on the conference.

[bjnc]

Thanks, Marla.  This report is so helpful.  I think I will give my optometrist a call to ask about special lubricating solution for my contacts.  I've had a hard time with them tearing easily and am wondering if it's due to the Sjogren's and dry eyes.

Becky

[Livvie2]

Marla,

Thank you very much for this info. (I have been having since two days ago increasing and more severe problems with dry eyes, so this is very timely for me.)

Do you know why the doctor liked Systane eye drops (over the other brands)?
I have been using eye drops (Refresh) which are preservative free and which have that "carboxymethcellulose" ingredient as this was recommended in a thyroid handbook.

I just purchased the Systane but their listed active ingredients ere Polyethylene Glycol and Propylene glycol.  I asked the pharmacist if she knew the difference.  She thought both would be okay.


Livvie2
   

[trector1955]

Hello,
    Thanks for all the information. The biggest thing about  Sjogrens is my eyes. My eye Dr. is great. and he is an MD. I even went up to John Hopkins for the dry eye issue But I love this eye Dr I have now. He cauterized all my tear ducks and gave me new glasses. I can see pretty good no, My eyes tear all the time. I just carry a tissue. Before they burned all the time. It felt like burning coals in my head. I would rather carry a tissue than have burning eyes all the time.
Theresa

[Joy Cox]

Smart a**, I might sound like.... Though truth is Systane is newest eye drop on market. And, it is being highly marketed.

The answer as was told me when I inquired upon receiving my second lens at Duke and I was handed several samples of Systane.

My question: As I held a vial of my current drops up and inquired if I might continue using them. Answer: Yes, but suggest you try Systane.

I did: And, do not like Systane Tears and again at naptime yesterday tried Systane Gel and got up with my eye lashes matted together. Sooooooooo used tube of ointment when retired for the night.

This is my opinion on 35+ years of using artificial tears :        And always wearing shades when outside!

Another truth: We're all different, use what feels best to YOU!

[Livvie2]

Hi Joy Cox,

To be perfectly honest, I can't tell if either eye drop (the Refresh or the Systane) is doing anything.  I just (before reading your post) put the Systane in my eyes for the first time.  I'm not sure how good a job it did with "lubricating." My eyes feel wet from the drops but still "dry."

 
I have an appointment with an ophthalmologist (second opinion) in two weeks.  The suggestion about consulting with an optometrist is also good. I'll do that also--(when I go for eyeglass prescription check.)

Livvie2

[ohiolady]

I've tried almost every drop and my favorite are preservative free TheraTears and Genteal Gel.  My eye doctor likes Systane too but I told him I prefer TheraTears and he recommends the Genteal Gel.

Anna

[Prairie Gal]

Systane works well for me, but I agree each of us is different and other drops may suit you better.  Systane Ultra seems to last longer for me, even though it dispenses a very small drop.  I also use TheraTears LiquiGel at bedtime because the drops are thicker and last through the night.  On the rare occasions my eyes are really irritated, I use Celluvisc (made by the same company as Refresh, as I recall) because it's really thick.  You can't read much for about 10 minutes, but the relief from the burning is wonderful, especially if you keep the drops in the fridge.  Years ago I started treating my dry eyes with Tears Naturale; there are so many more choices now.

I thought Dr. Cohen's presentation was excellent, too.  One additional bit of information:  to avoid burning from Restasis, he said to put in OTC drops, wait a couple of minute, and then use the Restasis drops.

Prairie Gal

[magistramarla]

Dr. Cohen gave a reason for liking Systane, which was the same one that my ophthalmologist in Texas gave when he first started me on it.  They both said that they like that it has a preservative (cheaper than those non-preserved ones), but it is a preservative that quickly evaporates as soon as it leaves the bottle, so that it doesn't stay on the eye long enough to irritate. 
I haven't tried any of my other samples yet, so I don't have anything to compare it with.  Of course, we were all told to try them all, and use what works for us.
Marla

[Cheryl]

Great thread!  Thank you, Marla, for representing us so well and for reporting.
A plug from me for Systane Ultra drops, too.  (My optometrist says to be sure to get the ultra.) They sting a little if I've allowed my eyes to get too dry, but after about a minute they feel great, and the moisture seems to last longer than other brands.
Cheryl

[lynnmarie219]

Thanks again for the reports from the conference Marla.....a great help to me and I'm sure many others!

[Patze]

Hi Marla,

Thanks much for the update, as it's very helpful!


Patze