Help!

[alisonW]

Fyi...

Dr. #2 said EVERYTHING was wrong. I had blepharitis, rosacea, blocked meibonian glands. Put in two punctal plugs took me off restasis and put me on Lotemax. Also said use Refresh PM at night. I went to see a dermatologist who said I DON'T have rosacea, but gave me doxycycline anyway. I've ben on that for a month without any relief.

You can absolutely have ocular rosacea without yet having facial rosacea. So Dr. #2 may indeed be correct.

Warm compresses, lid hygeine, ad preservative-free drops should help you as well as the doxycycline. (I was told it would take at least two months for doxy to have any affect.) Best of luck to you.

[Barbara Kaplan]

Help

Thank you to everyone. I obviously have a ton to learn about all this. I am reading through Dr. L's book. Yes, I have been adding a nutritional component to my care. I have taken fish oil for years, but on Dr. #2's advice have added flaxseed oil. I am pretty sure it accounts for my triglycerides number dropping a lot.

One of my big issues right now is that my eyelids swell when ever I play tennis or go for a brisk walk or even dig around in the garden. I'm wondering if this is related to the ocular rosacea. Has anyone experienced that? If so, what did you do about it? Thanks.

[calcan]

ocular rosacea

Walking and moving around can cause the flushing that causes ocular rosacea, because the body heats up during physicial activity. I have the same problem.

[eva]

acarol

I agree with your message about the power of positive thinking.

From what I learned about this website, the majority of the people do not have Sjogren's Syndrome.

For those few that have (I am one of the lucky ones - NOT) it's best to accept the fact that things are only going to improve as far as discovering
new "goop" to buy. Dry eyes ain't ever gonna go away unless there is a cure
and that's not realistic to hope for at this time.

I found out about the Genteel Preservative Free gel being available in the USA
which has been a huge help to me personally. For that alone I am grateful to have discovered this website.

Having said that, it's important to differentiate about hoping for dry eyes to go away altogether or just be realistic and find a way to cope with what you
have for the rest of your life.

In my case it's not that bad (l hope it stays this way) but for lots of SS patients it's very difficult. Thus , the power of positive thinking is just accepting a rotten disease for those whose quality of life has been greatly reduced. I am very grateful that I am not one of those patients.

eva

[Rojzen]

uncertainty surrounding EVEN Sjogren's diagnosis

Further to the idea of permanence: I hope that people diagnosed even with syndromes that come with labels and typical prognoses will remain open to the possibility of change and healing. There are concrete ways to put together a diagnosis of Sjogren's, such as by testing for the Sjogren's antibodies and doing inner lip biopsies, but I can say, from experience, that good doctors don't always agree on a diagnosis or prognosis, even when positive factors are identified. To wit:

In 1998, one ophthalmologist (at Wilmer Eye Institute) and one rheumatologist (local) both diagnosed me with Sjogren's, based on a combination of blood tests and eye examinations. Within 6 months of that diagnosis, 4 other ophthalmologists (from U of Md., Schepens Eye Institute/Mass Eye and Ear, Bascom Palmer Eye Institute, and University of Texas) all told me they believed I did NOT have Sjogren's. A rheumatologist from Johns Hopkins concurred, telling me that while I may have some autoimmune disorder affecting my eyes, it was not Sjogren's.

I will go so far as to say, moreover, that even if one has high-level Sjogren's antibodies (way above the ambiguous zone), positive infiltrates on biopsy, and sicca in the eyes and mouth, these conditions may not last forever. Autoimmune syndromes are relative poorly understood, and there are more doctors every day who are beginning to believe that what we call autoimmune diseases may, in fact, be immune-deficiency syndromes that are responsive to immunotherapies, such as LDN (low dose Naltrexone). . .

This evolving understanding of the many inflammatory conditions that can affect our eyes and mouth convinces me that it may be needlessly depressing to accept a diagnosis of "Sjogren's Syndrome" (or any other "autoimmune" syndrome) as a life sentence. . .

[Lucy]

You basically have the same treatments available to you whether you have Sjogrens or dry eye due to some other problem. I got dry eyes from lasik over 8 years ago. I was diagnosed a year and half-ago with Sjogrens. This whole time, I've had dry eyes that kill me. I've tried everything like most people on here. Because I was diagnosed with Sjogrens did not matter to my eyes. I had to keep looking and trying. To have Sjogrens, you don't certainly have to give up "hope" but if you're really sick, you do need treatment. It can make a difference. Unfortunately, my eyes have not picked up any improvement and my mouth has followed in the past year being dry. I have an appointment for possible autologous serum drops at a University Hospital in June. It's the only think I haven't tried. I have no reason to think it will work, but I have to try it. Will report later.

Lucy

[tobhealthy]

How discouraging to say that once you have dry eye you will always have it, if you read the 'dry eye triumphs' on this website you will see that a lot of people have recovered from Dry Eyes

I will continue to use my eye drops etc. If this is the worst condition to have I will consider myself to be very lucky. You must be very young with no other exsisting health issues to deal with.

[tobhealthy]

FOR lUCY

I've seen them in stores, but have not used them. Here's the link below to their website. It shows they're available at (almost) all drug and other stores.
Maybe I'll buy a bottle or box and see what they're like. Lucy


http://www.minidrops.com/html/dry-eye-care.html

Hi Lucy Hope these drops will help your eyes. Let me know how you are doing. ----------------------------------------Fran/CA

[eva]

Rozjen

I wish you were right. I like your attitude.

On the other hand, I don't particularly find the SS diagnosis depressing as in being depressed.

I consider it a fact, don't like it and try to make the best of it. Read Forums like these to be as educated about various treatment options, eye drops etc etc. Makes me feel I have some control over my body.

Maybe I wouldn't feel quite this positive if it was as debilitating for me as it is for some people whose postings I read. I don't think about the condition getting worse although I know it could happen. On the other hand I could cross the road today and be hit by a truck. So I move on and deal with things as they come up.

eva