[greenhaggis]

Hi all,

For the last 6 years I have been receiving treatment (false tears and oily night-time cream) to help with the dryness/scratchyness in my eyes. I also have silicone implants in my tear ducts which helped greatly especially in the Summer time.

My eye specialist or his staff have never told me if I have Sjogrens. I do have 'Map-dot dystrophy' and 'Pigment Dispersion' which in the last 1.5 years have not got any worse. I was diagnosed with these problems when I was 5 months pregnant with 3rd child. Specialist thought problems could have been triggered by my constant vomiting.

Since then although they know I had a positive ANA the eye clinic has not done any further testing. I did have the paper test and that's all I remember.

'Are there more specific tests to diagnose Sjogrens?'

Lesley

 

[Katharine]

Hello again Lesley,

I believe that there is a more specific blood test for sjorgens, though I'm less sure on that.

When my rheumy was trying to find out what was wrong with me she did send me for sjorgens tests as I also had those symptoms.

As well as tht paper test you spoke of this involved the extra blood tests and also a biopsy taken from inside the lip in your mouth (I had a skin biopsy done on my stomach at the same time). The biopsy of the mouth is specific for sjorgens, I think the pther one was the dermy's idea as she had seen photos of my malar rash. In the end it was the skin (stomach) biopsy that clinched my SLE diagnosis.

that was my experience,
Katharine

 

[Maia]

It's diagnosed much like lupus is - with a combination of symptoms you experience, signs your doctor can see, and bloodwork/biopsy results.

Dryness of eyes/mouth are common symptoms, a biopsy of mouth glands will often show typical changes in Sjorgens, a bone dry Schirmers test or Rose Bengal staining test positive for dryness issues, in combination with constitutional symptoms common in Sjorgens all point to Sjorgen's.

The blood test results that are commonly positive in Sjorgens are SSA &/or SSB (& are only somewhat specific for Sjorgens), although these antibodies need not be positive in order to be diagnosed with Sjorgens.

The bottom line is treatment is similar to lupus treatment, with Plaquenil being a baseline treatment although it often takes 2 years to notice improvement with the dry eye issue with Plaquenil. Otherwise, you are already getting symptomatic relief. You may want to inquire about Restasis eye drops, these helped me immensely with my dry eye (& I have not been diagnosed with Sjorgen's either - dry eye can be symptoms of lupus too).

Good luck!

 

[greenhaggis]

Thanks again everyone! I don't know what I'd do without this site for info.

Maia, What are the drops you mentioned for! At times I have asked Specialist if there is a painkiller that I can apply directly to my eye. There is one but apparently is can cause damage. Unless the weather is really hot I can't really use the day time false tears as I find I then can't see to drive for at least 30 mins, which is no good when I have to do lots of different school runs!

I am finding that all Specialists that I see are reluctant to give names to any conditions that I have. I have had mention that it is easier to get insuance if they do not note conditions on your files, but I'd rather get recongnition and proper treatment. The eye specialist treats me like someone that has no life and can just put drops in my eyes before the care of my kids - perhaps it due to most of his patients being 20 years older than me, who knows!!!

I do find like others treatment in the UK is lacking in something!

Lesley

 

[Maia]

Restasis isn't a pain drop - it can actually increase the amount of tears the eye produces. It helped me quite a bit within a few weeks time. I think it helps about 50% of those who try it, hopefully it will help you too!

 

[Lily]

Interestingly when I looked up Restasis it said it won't increase tear production in those who have the duct plugs - goodness knows why but there's probably some practical explanation which is beyond me??

I dont have the punctal plugs I do use another type of eye drop which doesnt give me vision problems - Genteal, at night I use the same brand but in a gel and it doesnt matter that I cant see through it cos I'm asleep :hehe: There are also others called Celluvisc here which I've heard are good they come in a daily use vial, probably more hygenic if you are prone to any eye infections.

love
Lily

 

[Lis]

Hi
I have sjogren's. I was prescribed Oculotect drops for my eyes. I use them every 2 hours or so. They come in single dose vials and are only available on prescription. They don't have any preservative in so they are completely safe with soft contact lenses. I find they are great and keep my eyes moist all day. I was also given a mist spray - chloromyst - which you spray onto a closed eye. Don't ask me how it works but it does - though to a limited effect. I use it if I have to drive any distance and can't stop to put drops in - it usually lasts upto 4 hours before my eyes are screaming for relief. I can drive immediately on using either form of relief and get no blurring of eyesight whilst using them. The chloromyst can be bought from most pharmacies or good opticians. I'm really lucky because my optician has sjogrens -he's always looking for the best ways of managing the condition and passes on any info he has as well as finding me the most amazing contact lenses which I can wear comfortably all day - along with the drops. I do put lacri lube in at night as my eyes stick over night and I can't open them in the morning without the gel.

Good luck
Lis

 

[Raglet]

mine was dx by symptoms, and also i have the antibodies.

I have sjogrens along with my lupus (test wildly positive for that too - I always seem to come up with lost of antibodies)

raglet

 

[greenhaggis]

Thanks everyone! I will ask my specialist if he can confirm or rule out Sjogerns with me.

Lis, I used to put drops in every 30 mins but found it very impractible when I then had to drive and vision was a bit blurry. When I attened eye A&E for a scratch in my eye they said I should try the silicone plugs and inserted them there and then. These plugs have for me cut down the times I have to use day time drops!

I use Celluvisc, which are excellent and come in disposable capsules. Plus and oily cream at night as like others my eyelids stick to my eyeballs!

Take care everyone!

Lesley