Sjorgrens or not

[donnabrain]

Hi.

I was originally told that I had sjorgrens in 2006.

I have had two shirmer tests, both bone dry.

I was under the lupus unit for 14 years as I also have antiphospholipid syndrome.

I have recently been told that I don't have sjorgrens as my antibodies are negative.

I have also been discharged from the unit, due to .y negative antibodies.

My eyes are very troublesome of late.

It feels as though there's glass in them.

I have used viscotears for 14 years and the have helped previously but this last couple of weeks I get no relief from them.

I am able to get some relief from slices of cucumber.

I was supposed to have some sort of " special " eye test on Friday, but it was postponed.

Has anyone else had this test?

What might it entail

[donnabrain]

Had my test.

Lady was very thorough, but also very gentle.

She measured the pressure behind d the eyes.

Put some special drops in to look for scratches, and flipped my eyelid inside out ,which sounded awful when she said she was going to, but I barely felt a thing.

She has ruled out the possibility of anything actually being in the eye( it feels as though there's a little piece of glass)

She said she believes my sjorgrens has worsened.

I told her that the lupus unit has discharged me.

She,s referring me somewhere else

[MichelleHarris]

hopkinssjogrens.org/disease...

The antibody blood test is unreliable.

A lip biopsy is the definitive test x

[Tempname]

Hi Donnabrain,

I think you're right to seek a second opinion, as it's very possible to have a seronegative Sjogren's diagnosis. Also with your APS this puts you at higher risk of SS.

sjogrensadvocate.com is an excellent website by a medical Dr in USA, might be worth having a good look through that before your appointment with a new Rheumy.

Best of luck, hope you get some answers!

[donnabrain]

Thank you

[SusieW2]

I've been going to a dry eye specialist in the US for several years. The test I had was no fuss or pain. I don't remember the name but a machine looked at the inside of my eye lids from the outside. It wasn't covered under my insurance so I had to pay $90 for it. It turned out that my eyes looked pretty good which was nice. But I don't know if the doctor had anything to prescribe if it had been bad.

He has only recommended that I take oral Omega 3 (&6) which has helped quite a bit. You can substitute fatty fish several times a week if you think you can keep the mercury levels down. I think eating more vegetables and other antioxidant foods helps, too. Also you can do the moist heat eye pads (or wash clothes). Do keep using whatever eye drops you like. You may want to change brands at this point. Avoid the red-eye reducers unless you need to look nicer for an event.

And then there's Restasis (US Company named) drops if you think its bad enough. They sting until you get used to them. I'm holding off until my eyes get worse.

I also use a diffuser at night and humidifier in the house to keep the humidity up to around 50%. Watch the condensation on the windows in winter to avoid window damage. There are oils you can add to the diffuser.

I also use an eye lid wash once or twice a day. Its available over the counter here in pharmacies.

Avoid places that are over air-conditioned, drafts, windy and dusty conditions. Stay rested, hydrated and Good luck!

[harmony2]

Have had Sjogren’s since well before I was diagnosed in 2004. A few suggestions:

1. Ask Opthamologist to insert punctal plugs to reduce loss of tiny bit of tears you make. (Unless s/he is quite experienced inserting them s/he may have to try a few times to get the sizing right. If they’re bit too small they will pop out in a few hours or days and you’ll have to go back and get a slightly larger size. Probably also need to make sure they’re latex free et cetera because it’s very rare but I’ve heard of someone having an allergic reaction.)

My first set was painless going in and lasted for more than 10 years.

When I needed some again I asked my GP about them first. He’d never even heard of them. Don’t be put off by that. It’s a common procedure for dry and it’s nice to have an option that doesn’t include another medicine.

2. Also pilocarpine. Take with meals or some bit of food and 240mls of water. Without food and water most people get excessive sweating as side effect.

[redhead63]

Yes, I had the eye test. You should make arrangements to get your eyes tested