Sjorgens

[KeepRinging]

Hi everyone.  I've had Lupus for about 35 years and have now developed Sjorgens.  Anyone else out there with very sore gritty eyes.  Ointments and drops seam to rule my life.  Anyone with any suggestions of other things that might help? 

[Barnclown]

i sure can relate to your post.  i'll be v interested in the replies you get as they come in.  took me a while before i found the most effective drops & nighttime gel for me...an expert immune dysfunction patients at my hospital eye clinic prescribed: artelac night time gel + hylo tears sodium hyaluronate drops + MGD Rx eye bag treatments (available on amazon) + antiinflammation diet with high dose omega & D3 supplements.  this regime does make all the diff to me, but i have to stick to it conscientiously...and even then my symptoms continue although damped down enough to mean i feel more at ease with my version of sjogrens dry eyes.  last year, a rheumatologist suggested a trial of pilocarpine drops, but my lupus clinic chief thinks pilocarpine would badly effect my already compromised autonomic system.

[KeepRinging in reply to Barnclown]

Many thanks for your reply.  Now on omega 3 and 6 so hope things will improve in time.  Sorry for the delay in replying but I'm not very good with this iPad technology!  

[PMRpro]

I used a liposomal spray during the day - I used to use Clarymist because my superb optician (who'd done research until he realised that didn't pay very well) was of the opinion it was the best (probably also the most expensive) but there are others. I don't know if it is still available, it isn't here in mainland Europe. You spray it onto your closed eyes and is wonderfully cooling as well as working quite well. It isn't messy (unless, I suppose, you use eye makeup) and doesn't make lumps as I found the really viscous stuff did - fine at night but a bit of the pest in the day.

[KeepRinging in reply to PMRpro]

Q

[Hidden]

I use Lacriube every night and Hyloforte drops during the day. I don't always remember though but I pay for it if I forget - especially the Lacrilube. Certain drugs have made the Sicca much worse such as Amitriptyline and Duloxetine and antihistamines, so I have to be very careful about what I'm prescribed now and check over the counter medications carefully. I am very allergic and also hypothyroid so I have always suffered from Sicca or rhinitis or conjunctivitis for as long as I can recall. 

[trixabelle_]

Hi!

Yes, I'm diagnosed with secondary Sjorgens so I luckily just get a few symptoms those being a dry mouth and dry eyes. Sometimes my eyes can be so painful, like a throbbing pain...not sure if that's Sjorgens related? I used a liquid eyedrop but found them to have no affect so went onto Carbomer gel, oddly a lot easier to put in and I feel like it alleviates the gritty feeling for longer. As for the dry mouth I just constantly drink water! 

[KeepRinging in reply to trixabelle_]

many thanks for all the replies that I have received. It sounds as though we all have various and different symptoms. Consequently we all need to work on a trial and error basis. What suits one person won't suit another!!  But it is very helpful to know that there are others out there with similar problems, and good to Hear ideas of what to try next! ----Keep smiling.

[Zamalek]

Hi there. I have Hughes Syndrome & Sjogrens Syndrome, under the umbrella of

Connective Tissue Disease. My eyes are very troublesome, though this changes

from day to day. I have had 2 retinal vein occlusions, and I have occular hypertension,

and also some cataracts. Heigh ho!!. IAt the moment I keep going back to Viscotears

Liquid Gel, on prescription, and various over the counter drops, none of which seem 

to be very good. I guess it's trial and error. Good luck.

[linda96]

Hi, strange but I posted yesterday about a Sjögren's flare up!  Still ongoing but not too painful.  Iv found complete rest is good and dabbing eyes with cold water on a paper towel.  Melopthal I use and lacrilube but sometimes you just have to put up with it and relax until it goes away.  

[Paul_Howard Partner LUPUS UK]

You may wish to contact the British Sjogren's Syndrome Association (BSSA) for more information and advice - bssa.uk.net/

[floisaac]

I've also had Lupus for 32 years and was just diagnosed with Sjorgen's as well. I find gel drops at night help a lot and I use regular drops in the day. The cells on my cornea are severely damaged but I do find relief with the drops. 

[zzukke]

Ask your ophthalmologist about "bandage contact lenses".  These are lenses your put in for a few days to give your corneas time to heal.  They do not have any or very slight prescription and do not affect your vision.  But they are like a gift from heaven after your ordeal.