nothing works!

[y-gwair]

I was first diagnosed with dry eye when I was about 20 and enquired about contact lenses, and was told my eyes were too dry to tolerate them. It eventually transpired that I was suffering from hypothyroidism at the time, which wasn't diagnosed or treated until I was about 35. The dryness was bearable through all that time, but for about 4 years now has gradually been flaring unbearably (I'm now 44). Last year I was finally diagnosed with undifferentiated connective tissue disease, with accompanying oral/ocular sicca. The rheumatologist prescribed celluvisc tears/lacrilube ointment, neither of which provides the least relief ( I can't use the lacrilube, it stings so badly I'm fairly sure I must have a sensitivity to it).

My optometrist says I have blepharitis; I certainly have extremely red inner lids/rims, but no crusting. Hot compresses and lid hygiene simply makes the irritation much worse. I've taken high-strength fish oil daily for a over a year, with no evidence that it helps either.

I'm at rock bottom at the moment, my eyes are extremely painful and upper lids swollen ( the pain affects both inner lids, and eye surface, I suspect abrasion?). I can't work or even read easily, it's so uncomfortable to keep eyes open for longer than short periods.

The current extreme flare seems to have been triggered by a virus, but has also been accompanied by other mucous membrane sores/boils and an increase in arthritic symptoms. I take hydroxychloroquine for the latter, which has also helped the oral sicca, but I don't think it is effective for controlling the sort of inflammation that affect the eye and its secretions. I've really run out of options (I'm in the UK, so restasis isn't available).

[aga]

restasis

In my country restasis is unavailable as well.But I sent the prescribtion to a pharmacy in Chicago and they sent it to me, so try to do the same.

[y-gwair]

Got so desperate I paid for an appointment at Moorfield's Eye hospital. The specialist said my eyes were very dry (schirmer scores 8). She has given me a new set of gloops (viscotears, simple eye ointment) and recommended punctal plugs if these don't work. After a few days on them even these new ones feel like they are making the irritation worse, certainly they give no relief from the pain and discomfort.

Having listened to the experiences of others with plugs on Sjogren's boards, I have to say I'm fairly sceptical about plugs.

[aga]

Got so desperate I paid for an appointment at Moorfield's Eye hospital. The specialist said my eyes were very dry (schirmer scores 8). She has given me a new set of gloops (viscotears, simple eye ointment) and recommended punctal plugs if these don't work. After a few days on them even these new ones feel like they are making the irritation worse, certainly they give no relief from the pain and discomfort.

Having listened to the experiences of others with plugs on Sjogren's boards, I have to say I'm fairly sceptical about plugs.

I know that you are suffering but 8mm is not so bad:-) For about 6 months I had between 0-2mm so remember- ONE DAY IT WILL GO AWAY( of course if you don,t have any basic illness)!!!!!!!

[y-gwair]

Unfortunately I do have basic i.e. autoimmune illness, so it will inevitably get worse.

[Lucy]

Sjogrens/Autoimmune Diseases

For those on this thread with Sjogrens or other autoimmune disease, you might like checking a website that, like this one, has been very helpful to me.

wwwSjogrensWorld.org

[EllMitcho]

Hi - I'm in UK also and managed to get Restasis from edrugnet.com - it's expensive but definately has helped a little

Good luck and hang in there

Ell

[y-gwair]

I'm not convinced that Schirmer's test measurements are particularly relevant. I've had dry patches confirmed following slit lamp observation several times in the past too, but even these don't correspond to the pattern of discomfort.

I'm fairly sure that the eye discomfort relates to inflammatory disease, it tends to correspond with more systemic flares of the latter and doesn't respond to any of the gloops. If the discomfort arises from inflammation-related changes in the glands and eye surface, I can't see how lubricants or punctal occlusion will help, as neither address or reverse the underlying disease process or remove pro-inflammatory substances within the eye. I feel frustrated that no anti-inflammatory-type interventions have been suggested so far, but I'd rather not initiate self-medication until I really have exhausted all conventional avenues.