A little overwhelmed by it all...

[katiedid]

After watching my mom suffer from Sjogrens all of her life, I was not surprised when I received the diagnosis last month. I had to give up contacts back in college (I"m now 48 years young) due to dry eyes but they didn't really impact my day to day until about 18 months ago when my mouth and eyes became noticeably drier. Back in November, my husband dug out some goggles from my kids swim bag and I sighed an audible sigh of relief. I've tried Restatsis, punctual plugs, refresh celluvisc (very uncomfortable), and nighttime ointment and didn't notice any relief. Currently, I'm taking the Theratears Omega-3 supplement, using refresh plus drops (sometimes 5 or 6 vials a day) and trying out some glasses from Willey-X (Airrage). The glasses help a lot though there are many nights when all the drops and goggles in the world won't keep my eyes moist.

I will get the tranquileyes and probably the Dwelle drops (although I hesitate because of my experience with Restatsis - ouch). My biggest priority is investing in some good chamber glasses - whenever I have to walk anywhere, I have to squint my eyes as it's too painful to have air on them at all. When I got the willey x with clear lenses, I was devastated to see that I looked like a freak. I forgot that when you take away the tint you could see the big ugly siding! I've read some of the threads about this and was really hoping someone had stumbled on glasses that were as effective at keeping the air out as the willey's but didn't look so bad, e.g. someone made these glasses with a lighter colored foam. I really need a good seal and am worried that the Seefit's aren't snug enough.

It's great to read all of your stories and learn from your experiences. I only have to read for 5 minutes to see how easy I have it compared to many of you. As I noted in my title, I'm a bit overwhelmed by all the information and still trying to figure out all the abbreviations but I'm so grateful to find a site that seems to have answered many of my questions before I even asked them!

[calli66]

Hi, I have Sjogren's, too. Seems like it just lies in wait for a person and takes over as you approach 50! Not fair! Have you found the forum at Sjogren's World.org? It's very helpful for all things SjS. But for dry eye info, nothing beats this forum.

At first my dry eyes were especially debilitating---because I was still wearing contacts. Much better since 3 years ago when I went back to glasses.

Dwelle does not burn and dry like Restasis--don't be afraid to try it.

Calli

[Lucy]

Hi Katie-
I'm like Calli and you, I also have Sjogrens. I was diagnosed 3 years ago. My dry eye problem really started though with Lasik eye surgery 10 years ago. I developed Sjogrens either before or after some time, but I'll never know exactly. (I know the Lasik didn't cause my Sjogrens!) It did however, ruin my eyes with messed up surgery.

Welcome, Lucy

[nycdryeyegirl]

Hi Katie!

I also have Sjogren's syndrome (although my dry eye symptoms are probably due to lupus).

I have two suggestions that you might wish to consider:

1. You might wish to consult with Dr. Esen Alpek, who is the director of the Ocular Surface Disease and Dry Eye Clinic at the Wilmer Eye Institute, Johns Hopkins Hospital (or any of her colleagues). I don't know where in Virginia you are located but I really think it is certainly worth a trip to have a consultation with Dr.Alpek (or her colleagues) to have them evaluate your condition and give appropriate treatment recommendations.

2. You might wish to consider using autologous serum eyedrops to alleviate some of the dryness in your eye. According to my eye doctor, he has a number of patients who seem to have benefited from using serum eyedrops, because your blood serum contains nutrients that might have a beneficial effect on the surface of the eyes. If you look on the DEZ forum, you'll see feedback from members who have used these serum eyedrops.

If you need any advice/feedback please let me know.

Pam

[katiedid]

What a coincidence - a friend just sent me information about the Sjogren's clinic at Johns Hopkins and I was wondering if it would be helpful to go there for an evaluation. I will give them a call to see if it would be appropriate to be seen there.

When you say that your dry eye symptoms may come from lupus - what exactly does that mean? Also, I have looked at the Sjogren's site but to be honest - that place freaks me out. I'm pretty uncomfortable (mouth and eyes) and desperately need help with my eyes but reading all those posts just scares me. I'm not sure whether it's good to know what could happen or if I should just focus on what is currently happening.

I haven't had luck finding an eye doc locally (I'm in central Virginia - near UVA) who specializes in dry eyes but will make calls about the autologous serum eyedrops - that sounds interesting.

Thanks so much for your feedback and time!

[SuperDave]

Autologous Drops...

Katie,
I had my Autologous drops made up at a pharmacy that does compounding....One of the guys there used to play football for me and wanted to help and did some research on it and we went ahead with it....I feel it did make a difference for me....slowly....not that complicated of a deal...just have to set up a blood draw and I have my drops by the end of the day.....On your glasses....I went to the Harley Davidson shop and bought me some 14 dollar goggles that make me look like a super Hero...But I cant do without them....they keep the seal I need and allow me to function...I gave up my vanity a while back when I decided I still wanted to have a life outside of my own house.....good luck!

[Guest]

Welcome to the forums Katiedid!

When I got the willey x with clear lenses, I was devastated to see that I looked like a freak.

I can totally relate to that! I wear my clear lens Wiley's 24/7 when at home, and while I LOVE the relief I get from wearing them, they sure don't do much for one's appearance, do they...

I really need a good seal and am worried that the Seefit's aren't snug enough.

They are nowhere near as good as the Wiley's, but I do find that they are better than nothing for those occasions when you MUST wear SOMETHING, and sunglasses are not the best option.

Also, I have looked at the Sjogren's site but to be honest - that place freaks me out. I'm pretty uncomfortable (mouth and eyes) and desperately need help with my eyes but reading all those posts just scares me. I'm not sure whether it's good to know what could happen or if I should just focus on what is currently happening.

I know what you mean about being scared about what COULD happen. I first found this site ages ago, and was freaked out at all of the horror stories on here. So.... I avoided this site for years, choosing instead to just passively do whatever my doc suggested... which was just continue using nothing but artificial tears (I was needing them every 15 minutes for the longest time) because, in his words, "You're doing great!" (picture my Lasik doctor with huge grin here). Anyhow, after 3.5 years of this, I finally started reading more on this site, and decided that I needed to find a new eye doc ASAP!

Anyhow, knowing all of the treatment options out there, and pursuing them with my new doc has been the best thing I could have done. I wish I'd done it years ago. I often suspect that my eyes never would have gotten this bad in the first place if I had been appropriately treated earlier on.

Anyhow, hopefully if you find out what treatment options are available, and aggressively pursue them, maybe you'll be able to minimize the progression of your Sjogren's-induced dry eyes, and avoid the worst-case scenarios that we read about!