I haven't been able to wear contacts now for about 6 years, when I had previously worn them 15 years prior. I was diagnosed with SLE and a secondary of Sjogren's syndrome in July this year. I have daily disposables that I put in when I go to the pool or beach, but any more than 4 hours and I get conjunctivitus for 3-4 days after.

Anyone with Sjogren's figure out a way to get back to contacts after having to give them up?

I have Lupus and secondary Soj. Syn. I too miss my contacts. At first, I was only able to wear mine one time a month!

Then, my eye doctor started trying different kinds and I found one that wasn't as irritating to my eye.

I was able to wear this new brand, one time a week for 4-6 hours.

Recently (at least a month) I went on a very strict diet, greatly reducing meat, flour products and sugar. I eat a lot of vegetables, quinoa, some fruit. I still eat some animal protein and those other things I mentioned...but perhaps once a week and a very small portion. I also started drinking more water. (I just saw that we've communicated before about this!!!)

I'm pleasantly surprised, but my eyes just feel better. They are less dry. NOT NEARLY AS SCRATCHY. I AM MUCH MORE COMFORTABLE. I can now wear my contacts 3x a week for about six hours each time. I'm not sure if I'll be able to wear them daily as I did before....but this is a considerable improvement for me. I use disposables as well.

You might try changing your eye drops. I personally like the following eye drops: Refresh Celluvisc/Sensitive and Preservative-free!!!! Then I use a different one for contact lens wear when I have a contact lens in my eye. You might experiment with different drops.

Can you see fairly well without your glasses? I suppose I would consider that for something like going to the pool. I save my use of my contact lenses for going out to dinner, etc.

BTW, be careful about going to the pool or the beach. Folks with AI illnesses often have a flare after being in the sun.

Thanks for all the info! I think you and I are on similar paths as far as seeing an improvement regarding diet. though, I haven't cut out bread or sugar. Currently, I've kicked most of the dairy, but I'm still struggling with an addiction to cheese. Though even that has been cut down, and I find myself making better choices to not have it even when it's available. (though lately I've not been doing well at all on the food front, and reverting to easier convenience foods... Somedays I have to pick my battles, and food loses. I know in my head eating better helps me physically, and when I'm feeling bad making bad choices will just perpetuate the cycle of feeling bad... So I'm getting back on the wagon regarding the food choices I want to make for myself.)
It's also great to hear there are options for improvement on the contacts part. Also thank you for the recommendation on eye drops. My doc wrote a perscription for both daily drops and overnight salve lubrication, however both were over the counter, and the pharmacy techs & pharmacists weren't confident in the product & information about purpose.
Since diagnosis in July I've been dealing with new meds and fighting the major symptoms, joint pain & fatigue, and then fighting the subsequent negative medicine reactions. I've always been dry - dry skin, dry hair, dry brittle nails. I've always hated lotions and greasy things, as it's not natural on my skin. Adding lotions or creams to my skin feels much like a normal person holding the insides of okra, or snot... Gross huh?
As for my dry mouth - I've always needed to drink with my food, and only until recently has it been dry when talking, and sometimes even just sitting not even using my mouth. I have the biotene gum, but I don't care for constantly chewing, and even with the gum I'm still unable to carry on conversations. I have found the most helpful is the halls sugar free losenges (next to the cough drops, but not listed as cough drops - I LOVE the blueberry). However, this isn't a solution, just a mask or temporary immediate fix for the issue, as it comes right back after the losenge is disolved.
Back to the eyes... When I stopped being able to wear contacts I thought I was just contracting pink eye. I went to optometrists, and opthamologists, for 1st opinions and 2nd opinions from each, and even more than that, because I had to go everytime I had the conjunctivitis flare. None of them picked up on Sjogren's as a possibility. They gave me steriod drops, salves, allergy drops, and the steriods seemed to help the flair the best, but again never fixed the problem. It was like there was an issue always there waiting to pop out. Low and behold - there was... The problem is my eyes don't "feel" dry. They're not painful or uncomfortable daily. I cry, and their are tears just as normal, or if I feel any emotion overwhelmingly the waterworks well up, just as normal. I only have flairs when I use contacts, or when I am emotional, for example, cry or get really angry, then it explodes into conjunctivitus. Which still isn't dry... Then I get all leaky and ocassionally yellow goopy. Because I don't feel their dry it's been harder for me to start the "treatment" of using drops 2x a day, because I forget.
Right now I have bigger fish to fry, and this "inconvenience" doesn't make the important list. I'm curious to know by not placing this as a priority and not treating the issue, will it continue to progressively get worse?

I'm sorry for blathering for so long - apparently I needed to vent a bit. I hope I didn't overstep your kindness, but it seems like we have a bit in common, and I could benefit from every bit of your experience.

Nice 'talking' with you!
My lupus, for the most part, is in remission.
Some days, I have very bad dry mouth and other days aren't too bad, I drink water all the time.
I like the sugar free lemon cough drops...any brand.
The Sjogrens Society is helpful...they have a nice newsletter. You might contact them. They have a list of local contact people for more personal attention.
I think the preservative free eye drops are best, since we need to use them so often. I think many people say their eyes get drier as they age. Mine did, but now they are slightly better. So, perhaps it goes back and forth. Now, they aren't as scratchy, so I too have trouble remembering to use the drops.
And of course you know that dental hygiene is super important! This is urgent!

I think I do need to get on that newsletter list, because I have been told that dental is important, but since finding out I haven't scheduled a dentist appointment. I haven't been in a year and a half when I had my wisdom teeth out. That was a bit traumatic, so I haven't been back... Yet. Though I know I need to go.
Do you have some info for me about the repercussions of not going to the dentist regularly, and how to find a dentist that is familiar with Sjogrens?

I know I seem to have derailed my own thread, so if you'd prefer to PM that would be welcomed. But if it's not against any rules, the answer here is fine with me too... Perhaps others looking for unfamiliar info on Sjogren's they find more info they weren't necessarily looking for, but maybe need.

The person in the newsletter for my area is in her early 80s, which I find inspiring. She has had SS for many years. In the last decade or so, she has had to have dental implants....expensive , etc. With less and less saliva, the teeth are slightly more prone to decay. She has told me, almost screamed at me, that we need, what she calls, A+ quality doctors and dentists. Ironically, I just went through a horrendous situation with a dentist that made an error ( not related to SS).
But, my new friend with SS, has heard many stories and even without an extra concern, sometimes it is hard to find a good dentist, period.
So, I would ask around and get yourself to a good dentist and fast. Get your cleanings twice a year. Be honest with your self, and brush a min. Of twice a day and try to floss nightly. Sure, there are going to be nights you miss, but try to keep them minimum. My friend also advises to use a water pick several times a week, on top of the brushing and nightly (or at least near nightly) flossing. I use Biotene toothpaste most days due to dryness and Act mouthwash (alcohol free with fluoride) most days.
My friend said that contrary to what others advise, she does NOT do fluoride treatments at the dentist because they can worsen a dry mouth and there is some controversy about getting too much fluoride. Now and gain might be ok...but not as often as most dentists would have you do it when they hear you have SS and don't do it if you happen to be having a bad dry mouth day.
Even if your mouth isn't particularly dry now, there is a decent chance it will be at least slightly dry in due time. The lack of saliva just makes one slightly more prone to decay, which can cause cavities and even the loss of teeth....so I would encourage you to ask around, find a good dentist, get a good cleaning and brush/brush/brush!
Hope you get the newsletter! Hang in there!!!