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Sjögren's Syndrome Message Board
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Old 03-16-2010, 01:40 PM   #1
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Cool eye problems

hi, at the moment i am seeing an endo as i have thyroid disease, chemical pathology for low vitamin d and a rheumatologist with symtoms of sjogrens such as extreme tiredness, dry mouth (but only during the night) a possitive ANA and very dry eyes which are very painful and very sensative to sunlight, it was suggested by rheumatology that my doctor referr me to ophthalmology, but when i asked my doctor if a referral had been made for me he said no i think you're seeing enough people at the moment and he thought we should leave it for now!! so not sure what to do now as i have tried many drops and gels none of which seem to help, i am going on holiday soon and fear it will be ruined by of all things "THE SUN" !! as i cannot seem to get sun glasses that are dark enough to deal with the brightness this in turn causes pain and extreme dryness in my eyes. grateful for any comments.

 
Old 04-02-2010, 02:18 PM   #2
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Re: eye problems

Quote:
Originally Posted by sparkle16 View Post
hi, at the moment i am seeing an endo as i have thyroid disease, chemical pathology for low vitamin d and a rheumatologist with symtoms of sjogrens such as extreme tiredness, dry mouth (but only during the night) a possitive ANA and very dry eyes which are very painful and very sensative to sunlight, it was suggested by rheumatology that my doctor referr me to ophthalmology, but when i asked my doctor if a referral had been made for me he said no i think you're seeing enough people at the moment and he thought we should leave it for now!! so not sure what to do now as i have tried many drops and gels none of which seem to help, i am going on holiday soon and fear it will be ruined by of all things "THE SUN" !! as i cannot seem to get sun glasses that are dark enough to deal with the brightness this in turn causes pain and extreme dryness in my eyes. grateful for any comments.

 
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Old 04-02-2010, 07:31 PM   #3
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Re: eye problems

Tell your dr you need to see an opthamologist because dry eyes can scratch the cornea. What's it to the dr how many you see? Is the dr part of an insurance program that gives him more money in his pocket if you are referred less to other doctors? Grrrr, your post got to me. Dry eyes can be so painful. I had very painful eyes and blurred vision. The opthamologist said I had very dry eyes. I am using the restasis and it has helped so much. During the day I use Refresh. I so far have avoided the plugs as the drops are working

 
Old 04-02-2010, 11:21 PM   #4
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Re: eye problems

I too have very dry eyes (keratoconjunctivitis sicca) but negative blood tests for Sjogrens. I use Restasis twice a day and drops with no preservatives that come in a little tube like Restasis during the day as well as Optive. My optometrist does medical exams but doesn't hesitate to refer out if needed. Maybe you could find an optometrist and they could refer out for you?

 
Old 04-03-2010, 04:03 AM   #5
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Re: eye problems

HI Mel52 , thanks for that , i am seeing the rhematologist later this month , and will ask her once again to referr me , but again it's down to the doctor , who doesn't seem to care less ! any tips on how i can ensure this is done ? i have heard alot of people mention resasis and refresh , havn't tried either , seem to help a lot of people , do you know if they are available in the uk ? if so i'll ask my very helpful doctor about them !! as yet i have found nothing that helps, many thanks for your help.

 
Old 04-05-2010, 09:09 PM   #6
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Re: eye problems

Hi, ask a pharmacist if restastis is available in the UK. In the meantime if you can research on the internet what damage dry eyes can cause and print out, maybe showing them to the dr if you are again turned down might make a difference. I can't imagine not using the drops. I was so uncomfortable. Also there are organizations for Sjogren's. Contact them and they will send you literature. Usually, rheumotologists like to refer a patient to an eye dr to treat the eyes. good luck

 
Old 04-05-2010, 11:25 PM   #7
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Re: eye problems

I use (Thera tears Sterilid) and a warm compress in the morning Cvs pharmacies has it. Then I use (Oasis tears plus) you buy this at the opthamoligist. I always felt as if I had an eye infection. only it wasn't after seeing three eye doctors he told me to use these. My eyes were very dry. I was misdignosed twice.
I hope this helps. please let me know if it does.

 
Old 04-06-2010, 10:39 AM   #8
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Re: eye problems

Hi ,yes i too thought the rhumotologist made the referal,but she wrote to my dr and thats where the problem lies, seeing her again in 2wks ,i wiil go in armed with the info, and ask about the eye drops you suggested. Thanks for your help.

 
Old 04-06-2010, 11:03 AM   #9
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Re: eye problems

Hi , yes i am very worried about how dry my eyes are , so far i have tried liquidfilm tears, oculotect, also many gels and the last one i was asked to try was lacri-lube which is a very thick gel that made my eyes blurred for a long time , all of these are useless, and my doctor doesn't really know what else to try , this is why i believe he should refer me , but no !! but i will not give up, anyway thanks for getting back to me.

 
Old 04-14-2010, 03:22 PM   #10
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Re: eye problems

Hi Sparkle16,

I have been having problems with both eyes but more the left so my opthamologist plugged the left eye and gave me lubricating drops and a Pred Forte drop solution. Those were not working so I received a prescription for Restasis a few weeks ago. Though it takes 4 -6 weeks to work fully, I have already seen a difference. My eye does not hurt that much anymore and I have times when my eyes tear on their own, which is a temporary relief.

I would definitely try to get the restasis if you can. You can also use gel drops during the day but just bare in mind that your vision will be blurry for a few minutes until the solution disperses.

Hope you find some relief soon!

 
Old 04-15-2010, 11:41 AM   #11
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Re: eye problems

hi Angie10, thanks for getting back to me, seeing my doctor next week ,i will ask about restasis, hope it's available in the uk, seems to be really helping you, and i have now read it helps a lot of other people too, but my doctor has never even suggested that i try it, just sends me away with some rubbish that never works, anyway thanks for your help, and take care.

 
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