I am curious if many of you have been diagnosed with corneal erosion and have problems with abrasions? That was my first early warn sign of having SjS I had a very painful abrasion about 10 years ago for no apparent reason and fortunately I had a good eye doctor at the time who put a patch on and treated me with eye antibiotics and numbing drops and told me not to use it for a few days, so I stayed home in the dark until it got better, it was one of the worst pains I have ever experienced like a spike in my eye. It seems to have fully healed because of that prompt immobilizing treatment, and hasn't re-torn in that eye. The doc told me to put in eye drops multiple times a day preventively after that and I have always done that.
About a year and half ago I had an abrasion in my other eye for the first time, I think it was a medication I tried dried it out, and it wasnt super painful like the last time, must not have been as big of a tear or something but it made my vision blurry and didnt feel great but maybe because it wasnt so dramatic and I wasnt freaking out and also the same good eye doc had retired -well they didnt treat it as aggressively. I didnt need a patch and they didnt give me special drops, just said to keep it moisturized and could have ibuprofen drops if want (which burn). Well that eye has never fully healed and for awhile it kept reabrading so vision was always blurry out of that eye. It gets better for awhile and then it reabrades (sp?). I wonder if they should have treated it like the more painful abrasion had been treated--if we would have put patch on it and antibiotic drops etc and just immobilized me for a few days of not using my eyes would it have fully healed? That isnt the standard of care though for that level of a tear I guess when the patient isn't complaining of horrible pain and debilitation. By the time I realized it was becoming chronic, well it was chronic, I doubt that putting a patch on it for a few days now would completely change the fact of what happened year half ago where it got damaged and weakened apparently, but I dont know. I just don't understand why the less painful, less apparently severe abrasion has turned out to be the more damaging one in that my vision is compromised out of that eye half the time.
Have any of you dealt with anything like this and what do you think of the apparent standard of care? it seems to me opthamologists are not well trained in how to assist SjS people with abrasions to prevent permanent damage perhaps, and I hve access to a Univ clinic.
Hi Wendyoh - so sorry to hear about your eye issues. I think most of us have some sort of eye issues, but probably not to the extent that you sounds you have had.
I made an appt with an opthamologist for examination of my eyes since being on plaquenil, but I asked the receptionist a series of questions about sjogrens and how well versed the optha. was with it. Then when I went in to see him for my eye exam, I asked him some questions as well...he seems as though he has treated several patients with sjogrens. I have some eye damage from dryness and letting it go for so long...it had only been about a year that I truly noticed the dryness of my eyes...but I guess with your eyes you cannot let any issues go for long - they are fragile.
Maybe you could try to "interview" opthamologists in your area and find one that is well versed and trained in treating patients with sjogrens.
Although I am certain the opthamologist probably did the best he could do for you, knowing what he knew (which sounds possibly minimal), it was not good enough. I have several articles that I have read about sjogrens, and many books since being diagnosed in January. I have brought copies of some of these articles to some of the medical professionals who "care" for me to try to better educate them. Most of very receptive to additional educational materials, a few - not so much.
I am sorry that you now have a chronic condition that will last your lifetime, that really stinks and the fact that it is painful is of course, even worse.
Unfortunately, as many medical professionals who are well trained and educated in sjogrens, there are many, many more who are not.
Good luck in trying to find someone who can help you to try to resolve the issue or to minimally make it less painful and bothersome.
This is why we should NOT be wearing contact lenses. I miss mine, too, but not that much! I hope you find a good doctor.
Sharon