Should I have further tests for Sjogren's?

[NotADryEye]

Visine contains BAK. Lots of info here on BAK.

http://www.dryeyezone.com/encyclopedia/visine.html

http://www.dryeyezone.com/encyclopedia/bchloride.html

[NotADryEye]

rheumatologist ...he's already said I don't have Sjogren's. My GP keeps telling me she thinks I have something rare but doesn't know what,

lizlou, do you consume a diet that is high in iodine - shellfish, sushi (seaweed), etc.

[lizlou29]

The food test I had done tested reactions on a scale of one to five testing 180 food and drink products. Elderflower and gooseberry (I think) were the only ones to show up and I don't like either anyway. I have no digestive symptoms that would make me feel I'm sensitive to anything so it's not going to be my main focus just yet. I'm not eating wheat, dairy or sugar and that's enough of a restriction for now. I tested negative for celiac.

I'm currently focusing on the thyroid problem and seeing an endocrinologist as my GP isn't thyroid savvy at all.

[PotatoCakes]

The serum drops won't "cure" you but with consistent use, they WILL make your eyes look better. When I'm really good about using mine, my eyes are a lot whiter and less inflamed. Not always, since there are other issues that also affect my eyes, besides lack of tear production but assuming the weather cooperates, my stress level is relatively healthy, I don't have a cold, or rosacea flare-up, the serum drops make a marked difference in the way my eyes look and feel. Hopefully they will for you too.

LDN did nothing for me and after I tried it, my naturopath said that she didn't have much faith in it - my MD had none but supported me trying it out.
I also tried eliminating food after getting tested by both an allergist and a naturopath. That didn't work for me either but I'm glad I did it because now I know that's not my issue.
Azasite didn't work for me except to lubricate my eyes shortly after use.
I didn't try Plaquenil but did try the other one (I've forgotten the name); it had no affect on my eyes but made me salivate and sweat profusely -- indicating I have no issues with those glands!

I've been tested for so many things and tried so many different things, short of locking myself in a bubble, basically nothing has worked except to address the symptoms and hope vacations are in humid environments Still, I needed to go through that process for my own sanity and I don't regret doing it, although I do regret the mental anguish I felt while I was seeing my former eye doctor. I'm glad you like yours. There are some amazing doctors out there, that will help you through your journey, even if they can't "fix" you or figure out what is wrong with you. Once you find a doctor like that, at least you can feel confident in your journey and if you're like me, and you have to live with this disease until they hopefully find a cure, you'll figure out what things make you feel better, what makes you worse, what's a waste of time and how to get on with your life. Some days I still feel sorry for myself but then I remember my journey here and I am thankful for my current medical professionals and where I am now.

Good luck with your journey.

[No tears in ATL]

Lizlou, I think we may be twins. I, like you, am mostly aqueous deficient, upper plugged, relatively young, tested negative for Sjogren's, thyroid, celiac, etc. No Lasik, it all just seemed to happen suddenly. Restasis was intolerable and made things worse. I've recently started doxy. My eyes are constantly inflamed, and nothing seems to help (I was taken off steroid drops cold turkey due to raised eye pressure). My doctor says there is nothing else he can recommend except IPL, which isn't covered by insurance at $300 a session. I am going to get 100% serum and see if that helps, but I am really tired of the red veins and lids. Feeling your pain, literally. Just know you aren't the only one who's constant inflammation seems mysterious.

[lizlou29]

Potatocakes -I really want to try the serum drops. I know they aren't going to cure me but I haven't found ANY eye drop that provides even 5 mins of relief, most make my eyes worse. In wish I'd moved on from the clueless eye docs earlier but you live and learn.

My US twin - Are you consisting IPL? My opth asked me not to try any more drastic treatments until we'd exhausted all options. I've recently started in thyroid meds but all I've experienced from it so far is my hair falling out. I read about something and want to try it straight away but I know I needadopt a more cautious approach because my eyes are super-sensitive. The thing that keeps me going is the pain changes/increases/decreases every day so there must be a reason for this. For example I woke up yesterday eyes very red, hot and sore and by last night the redness had gone down and the pain reduced. Today I woke up feeling better than I had done all week then 2 hours later I wanted to cry with the pain and my eyes look awful. There must be a trigger so like Potatocakes I want to explore all options before I accept that at 29 this is it.

[No tears in ATL]

My US twin - Are you consisting IPL? My opth asked me not to try any more drastic treatments until we'd exhausted all options. I've recently started in thyroid meds but all I've experienced from it so far is my hair falling out. I read about something and want to try it straight away but I know I needadopt a more cautious approach because my eyes are super-sensitive. The thing that keeps me going is the pain changes/increases/decreases every day so there must be a reason for this. For example I woke up yesterday eyes very red, hot and sore and by last night the redness had gone down and the pain reduced. Today I woke up feeling better than I had done all week then 2 hours later I wanted to cry with the pain and my eyes look awful. There must be a trigger so like Potatocakes I want to explore all options before I accept that at 29 this is it.[/QUOTE]

I have not tried the IPL yet. A little scared of that and it may not work for what my condition is (probably more of a toxic tears/inflamed eye surface thing, the way it's been going, lately). Like you, most eye drops make my situation worse. When I explain that to doctors, they look at me like I have 3 heads.

[lizlou29]

Exactly the same with me. My last opth refused to believe that I got no relief whatsoever from artificial tears. He told me to use them more often. Night ointments are the worst. Have you tried serum drops? It's nearly 11pm here and I can here people laughing in the bar down the road from m me. Makes me feel down as a year back I would have been in there with friends but now its a struggle to go to my local grocery store let alone socialise Friends/ family think I need to acvept the condition more but that doesn't magically mean I'll be able to do things again.

[No tears in ATL]

Exactly the same with me. My last opth refused to believe that I got no relief whatsoever from artificial tears. He told me to use them more often. Night ointments are the worst. Have you tried serum drops? It's nearly 11pm here and I can here people laughing in the bar down the road from m me. Makes me feel down as a year back I would have been in there with friends but now its a struggle to go to my local grocery store let alone socialise Friends/ family think I need to acvept the condition more but that doesn't magically mean I'll be able to do things again.

The first round of serum tears I liked (50% concentration). Then I got a bad flareup again for some reason and went a bit downhill. Now it's rough again. Some of the folks on here say that the 100% serum concentration is a better feel on the eyes so I may try that. Feel free to PM me if you have any questions about anything. Will be happy to share my experiences. I agree, social situations are difficult, especially when you're in the middle of just feeling bad, and worn down from it all. Bright side is that by the time they figure this whole dry eye thing out, you'll be still pretty young! I'm hopeful, I really am.

[LaDiva]

[QUOTE= Makes me feel down as a year back I would have been in there with friends but now its a struggle to go to my local grocery store let alone socialise Friends/ family think I need to acvept the condition more but that doesn't magically mean I'll be able to do things again.[/QUOTE]

I know just how you feel. I keep having to tell friends that I can only do so much because I don't feel well...ever. Still, I am invited three places in a weekend, and when I say "no", the same people keep asking "why"? I am thankful to be asked, but unless you have this disease, you cannot understand what it does to your life. I am now doing much more than before, but cannot go, go, go as in the past. IPL helped open my clogged glands, and it did help my dry eye, but the treatment still didn't get them to a point where they were comfortable.

Also, my hair was falling out. I started taking iodine and think the hair fallout has improved, and also that I have more energy. Not sure. We will see.

Bless you. I hope that you will find something that helps.

[Faith1989]

Ladiva, what do you do right now? Anything helping at the moment?!

[LaDiva]

Hi Faith,
Yes. I am double plugged now in one eye, and seriously considering having the same thing done in the other eye. (Currently two in one eye, one in the other.) Cannot tell exactly how much the double plug has helped because I still must wear goggles for the other eye to be comfortable, but the double plugged eye is definitely better now. Nothing else new except for the iodine, and it is a little early to tell. The eye that is double plugged doesn't seem to be having as much trouble with the oil glands getting plugged. Wish we had a magic wand!

[lizlou29]

I still don't know how to get friends, family and colleagues to understand. I have to try and put myself in their shoes, they want me to be better and a lot of people just don't understand that red, sore eyes could be permanent. I wouldn't have before this happened to me.

With work colleagues they now just ask 'good or bad day?' so I don't have to explain. My boss still tells me how lucky i am not to feel pain like the bad back he gets occasionally. My family are great but they seem to think I don't listen to the eye docs when they tell me not to let this become a problem and just get on with my life as if I don't want that for myself. Friends are the hardest because when you don't see them for a while and keep saying you can't see them I think they start to feel that you don't WANT to see them. Its probably because they don't see how much we struggle every day. My best friend who I talk to daily still thinks I need a night out and a holiday to make me feel better...

Today is a very bad day. Stuck at home again. Had been invited to an old school friend's big 30th birthday party but obviously can't go. Going to put my goggles on and clean so I feel like I'm actually doing something.

[Faith1989]

Myabe ask your doctor if you may be able to try a different steroid to use, even a preservative free one. I use this before I go out, and am usually good for a few drinks as long as I use tears every hour. I am still in the process of trying to get used to my sclera las, but before I try them again, I want my eyes to be in good shape. SO until then I will use the low dose steroid when I go somewhere.. Fml didn't help me either.

[lizlou29]

Myabe ask your doctor if you may be able to try a different steroid to use, even a preservative free one. I use this before I go out, and am usually good for a few drinks as long as I use tears every hour. I am still in the process of trying to get used to my sclera las, but before I try them again, I want my eyes to be in good shape. SO until then I will use the low dose steroid when I go somewhere.. Fml didn't help me either.

I'm going to see what my opth says about a different steroid drop. Ive tried them a couple of times now with no relief but my eyelids are now more inflamed than they've ever been so I'll ask about Lotemax. My OP has always been ok so I know I'm not a steroid responder.

I've not found one thing that provides me any relief yet and that is very frustrating. The pain is now relentless. I woke constantly through the night last night. My eyes get so hot from my tranquileyes eye mask but I worry my eyes may open slightly if I don't use it.