Going First

[skygoddess]

Well I saw this new category, and thought maybe I would get the ball rolling. If you have been diagnosed with this condition, as I was, what have you experienced?
Is your rosacea severe? Do you work with a dermatologist?
I keep wondering if a cure for rosacea is found , will my eye problems stop? And is there any good news on that front?

[Rebecca Petris]

Yes sorry - forgot to mention it. Someone (Ronny was it you? Thanks!) suggested it months ago and I finally got to it. I will eventually try to file prominent rosacea threads from Open Forum here.

[Eli]

Hi Skygoddess,
Dr. Latkany diagnosed me with ocular rosacea. I would say I typically have subtle/minor signs of facial rosacea-it can vary daily. I haven't noticed anything specific in my diet that seems to cause more redness, although I'm sure there are some culprits. Maybe when/if my facial manifestations get worse I will be able to identify more triggers. Right now the only the thing that I know will reliably make me flush is acute emotional stress/embaressment. Also, yes, I saw a dermatologist. He said if anything, he saw some moderate sebbhoreic dermatitis, which is more a problem with the oil glands of the the face (and sometimes other areas of the body) and not so much a vascular issue. He gave me Oracea (doxycycline) and Elidel cream to use. Interestingly, the active ingredient is pimecrolimus, an immunomodulator, which is also being tested by Novartis for use as a dry eye treatment. As far as the ocular symptoms go, I will be quite frank-they have pretty much ruined the life I was used to living. I feel badly complaining when others on this site have suffered so much worse, but well, there you have it. I was between jobs when I was diagnosed-and ended up being out of work for nearly a year. I am trained as a car/airplane technician and there was simply no way that I could work around all of the chemicals/irritants that these jobs expose you to. In fact, I may have to abandon this career indefinately-we'll see. I thank god (I don't know if he is listening) that my family has been able to assist me financially for the past year-otherwise I would be in very serious trouble. I think the doxycycline has helped some-the previous course of minocycline seemed to do very little. I hope you have found some relief! I'm sorry you have to go through this too!

[Eli]

Just saw your post about AzaSite! Congratulations! I will ask Dr. Latkany about this when I see him soon. I hope your improvement continues!!!

[MarilynS]

Diagnosed with Ocular Rosacea today

My "dry eye" symptoms had gotten so bad that I was thinking I might have to quit work. I had actually spent whole days in my basement avoiding the light. I was waiting for an appt with the Opthalmologist (6 month wait time) so I started trying anything I could think of. I began taking Omega 3 supplements, added Vit A and Potassium supplements as well as Evening Primrose Oil. About 2 weeks ago I began lid scrubs twice a day and have been using single dose preservative free eye drops several times a day.
In addition, I have had several hypnotherapy and NLP sessions (NLP is sort of a kind of psychotherapy).
Using this strategy my eyes were better than they have been in several months- almost normal feeling some of the time and not too bad a lot of the time!! Hallelujah!!

My appointment with the Opthalmologist was today, and I was actually relieved that the dx was Rosacea and not just dry eye as it's my understanding that Rosacea treatment may work and there's not much effective treatment for dry eye.

I plan to follow the Dr's advice (doxycycline once a day,steroid drops 4x a day at first and tapering to once a day, antibiotic ointment at night) for the time being, anyway. He also suggested a warm compress for 5 minutes once a day.

In spite of my intent to follow the Dr's advice, I feel that my own strategy had it "on the run" and I'm hopeful that when I reach the maintenance phase I'll be able to greatly decrease or discontinue drug use . Maybe I'm naive...I hope not.

I know there are people out there suffering greatly, and I urge you to try lid scrubs if you haven't already, and explore whatever options there are in your area for hypnotherapy/NLP. Some practitioners do phone consults if you have no resources in your area....

Best of luck, MarilynS

[dianat]

Marilyn,

Great news! I'm really happy for you. I do love to hear good news.

D