sjogrens eye gels or drops: please can anyone who... - LUPUS UK

LUPUS UK

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sjogrens eye gels or drops

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please can anyone who is also suffering from sjogrens too please give me advice on what drops or gels works best for dry eyes,there are sooooo many to choose from and im really uncomfortable with my eyes everyday, ive only just been diagnosed so its all new to me.

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Hi I use carmellose ( cellevisc) eye drops during the day and Viscose tears gel at night that seems to work ok for me hope this info helps, sorry to hear you've just been diagnosed though at least you now know what you are dealing with and it's a weight off your mind to know! good luck and I hope you don't have it too badly xx

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Hidden in reply to lupie-Cathy

thanku lupiecathy

yes u r right its better to know what you are dealing with as i have been so confused with the eye swelling and the awful dull ache in my cheeks which i now know is my glands, sadly i ended up telling my doc what ive now got along with lupus he kept telling me it was alergies and had me go through months of testing which all came back negative and i eventually got him to see that it was a connection to my lupus.

god sometimes you feel you have to do their job for them to me it was so obvious.

pinky56

I tend to use normal eye drops. As long as it says they're good 4 dry eyes and I find this works 4 me :0)

Hi there

I'd take advice from your doctors/optician. When I was first diagnosed I was prescribed Hypromellose, but this damaged my cornea and so I now use Carmellose too. I use lacrilube at night which is quite thick, but very comforting for my eyes.

Good luck, and now that you know what's causing your symptoms I'm sure you'll find that things improve - just get into the habit of using the eye drops as prescribed so that they are well lubricated. It makes such a difference!

roobarb
roobarb in reply to Lupylass

Hi lupylass, I was interested by your comment that hypromellose damaged your cornea. I have been using these more lately & have noticed loads of 'floaters.' I booked an appointment at the optician last week, but was too exhausted to go. I'll rebook it asap, but wondered what were your symptoms, if any?

Lupylass
Lupylass in reply to roobarb

Hi there. I didn't have any symptoms that I was aware of - it was the optician that diagnosed the damage and recommended the change to Carmellose (Celluvusc).

roobarb
roobarb in reply to Lupylass

Thanks. X

I was given Vicose tears for a day and Lacrilube of a night as the lady said its very thick like Vasaline but works a trick.. My eyes would stick completly shut of a night before that.

I was given these by the eye hospital in liverpool where my GP refered me to, I also had eye bungs fitted at one point to stop my blink washing away all my tears but they were very uncomfortable and I wouldnt recommend it if you can help it.

Good luck its a horrible condition and so painful at times.

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Hidden in reply to Paula1968

thankyou for your reply many people have suggested lacrilube so i have ordered some to give it a go.i will try anything to stop the horrible irritation, im starting to believe that there is no magic cure im just gonna have to get on with it. GRRRRR

since i have started having lupus symptoms i visited moorfields. this was before my diagnosis and they insist that i have bilateral bletheritis. this was last year before lupus was diagnosed. they still insist on this as the cause of my eye problems.

i thought it maybe sjorgens oh well!

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Hidden in reply to tintin49

hello tintin49

my doctor always put my swollen eyelids down to alergies which went on for months before i did my own research on sjogrens and then told them thats what ive got and finally they now agree with me. its very frustrating sometimes.

i agree pinky i have never had to learn so much about symptoms all my life. i always thought that was the drs job.

Hi pinky, I to have sjogrens and have tried lots of different things for it but find only lacrilube gives any real relief. My little girl has severe dry also and for her its only lacrilube that helps to. Its like vaseline for your eyes and you struggle to see out for a few minutes, it also looks greasy but that's a small price to pay to be painfree! We've both found after a few days regulr use a few times a day then u will probably only need use it at night unless your on a flare. It is available on prescription. Good luck I hope u get some relief x x

Hi pinky, I have Sjogren's. I tried Hypromellose drops but binned them after they caused flare after flare. I couldn't see anything for about half an hour after I'd used them. Awful stuff. Told my optometrist who suggested I try Systane (wonderful) and also to frequently wipe my eyes with Supranettes sterile eye cleansing wipes. I find them incredibly soothing particularly because my eyes burn a lot. I pull my lids apart trying to wipe every bit of my eyeballs, lol.

For DRY MOUTH I SUCK ON PRUNE PIT OR OLIVE PITS. IT CAUSES SALIVA TO BUILD NATURALLY.

I use gel at night & insert about 3-4 times a night. The liquid drops did not work as were too thin & my eyes would stick together same as if I used none. I did get a moisture gel from dentist & use this at night on the gums. It helps the uncomfortable mouth dryness during the night. I also use a netti pot during the days for nasal passages. It feels great after.

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