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whirlway

Cornea Erosions

8 posts in this topic

It's me again. Just wondering if any of you with sjogren's suffer from erosions on the cornea? Actually, a fancy name for cuts or tears on the cornea. If so, what do you do for the pain? I use restasis twice a day and otc artificial tears, but those things don't take away the pain. I can't seem to get my opthamologist to understand the pain these cuts cause. This is such a good place to come for good advice. Hope everyone has a great, painfree day.

~whirlway

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Hi Whirway,

 

I'm so sorry you are having this pain with your eyes!

 

I am at the beginning of Sjogrens they "say", but so far my dryness is "mild-Moderate" and I was offered drops for this. I don't have the cuts or tears you are talking about but it sounds so miserable, my heart goes out to you.

 

I don't have any great advice, hoping someone with first hand knowledge will chime in here, but I did want to give you a link from our ISN site that perhaps will help you a bit.

 

http://www.sclero.org/scleroderma/symptoms/sjo...html#treatments

 

Hang in there my friend!!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi, I am starting to have eye pains and pressure behind my eyes and I'm concerned it may be something serious. This weekend I had this sharp pain in my left eye like glass was in it for 30 seconds. I didn't know what to do but stand there with my eye closed hoping it would go away. I'm going to ask my rheumatologist about it on Thurs.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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yes yes yes, i do take something for that very condition you are describing, i get the corneal deposits, that cause severe scratching on the eye surface, and I too take restasis but there are days when the pain will not stop. my eye doctor prescribed eye drops called "predforte" yes, basically prednisone ground up so fine it goes into liquid and you shake up the little eye bottle and do a drop or two in the painful eye, they are not to be used all the time, i find I use them about two times a month, and that's it. the doctor says there is nothing wrong with that dose at all. so check and see if your doctor will give you a bottle to try, they sting a little when you first put them in, but within minutes, pain is gone. hope that helps. lori

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Hi Lori,

 

I noticed this is your first post. I wanted to welcome you to sclero forums. You will find a lot of support, information and friends here.

 

I'm sure sorry about the problem you are having with your eyes - it sounds so painful!! I hope you can get some relief soon.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Update: I asked my rheumatologist about the pain and pressure. He referred me to an ophthalmologist who’s familiar with Sjogrens and scleroderma; his wife is a patient of my rheumatologist. The ophthalmologist saw that my eyelids don't shut all the way because of the scleroderma. Thus my eyes are getting scratched and dry. He told me to get an OTC salve for night use and OTC drops for the day. So far the pain and pressure’s gone away. He says if I use a lot of drops I’ll be put on restasis. I’ve heard mixed results regarding the effectiveness of restasis.

 

Maybe you need to see someone who is more familiar with Sjogrens and Scleroderma. I wish there’s more I could offer. I see my ophthalmologist in a few more weeks. If he offers anything new I’ll be sure to pass it along.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Whirlway,

 

Wow! Now that's a problem!!!! Sorry, I don't have any advice, but wanted to let you know that my thoughts are with you, and hoping that you can find some pain relief soon. The only thing that comes to mind are the drops that are used to numb the eyeball while being tested for glaucoma and wondering if there's anything like that on the market. I'm so sorry that you and your nephew are going through so much!

 

A bear hug to both of you,

Elehos

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oh not to get off topic, but "sweet" I was on the old board many moons ago, but when I logged on to check something out someone told me about, I found that we all kind of moved on over here, so I moved too!! To the eye problems - restasis works wonders for me, and I only have to use my predforte rarely, maybe 2 times a month which is not bad at all. I will post a general "newbie" post on the main board just to update the people who have not heard from me in MONTHS, at least!!! Thanks for the welcome, I hope the eyes are better to the woman with the corneal erosions, believe me, they hurt, I know. The other thing you might want to ask your optho is if he will dialate your eyes, and use a "slit lamp" to see if they are leaving scars, mine do, and I have gone from about 5 in each eye to 12 in each eye, it can be a problem down the line if they are in your field of vision, so I have them check my scars about every year, I don't know at what point they would actually do something about it, but they do check the scar count so to speak. it's such a strange disease isnt it? Best to you all, Lori

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