New Diagnosis: Rosacea

[itchyeyes]

Hello Everyone,

I posted a while back about being diagnosed with Blepharitis and Dry Eye.

I've been suffering a lot since July now. I finally went to see Dr. Latkany today and he believes I have Rosacea, not Blepharitis. He has started me on steroid drops for a month and adviced me not to use heat but cold compresses... and to cut out certain foods... I opted for a less powerful steroid drop, but he believes I may need a stronger one to get control of it. And he said that I could have Cromolyn compounded without a preservative so that it doesn't dry me out.

He said there is no damage to my cornea which was a great relief. The inflammation is in the lids and surrounding areas. It really did feel like my cornea was affected also.

This explains a lot to me since I've had symptoms for years relating to Rosacea. I'm keeping my fingers crossed that I will be able to get this under control and get some relief.

He wanted me to stop using everything except these drops to see if they work. But he did say that I could use Dwelle also if I prefer to. I'm not sure what to do yet.

I will have to limit my diet and exposure to irritating things even more. He also gave me the name of a new allergist to visit.

I know this isn't over yet by a long shot and it prolly never will be completely.. I feel some hope now... I was beginning to think I would like to spend the rest of my life in my bedroom with a vaporizer and low lights on.

The treatment for blepharitis was actually causing my symptoms to worsen.
I hope I can tolerate the steroid drops. I have been so sensitive in what I could put near and into my eyes for years now... there were very few creams, make up that I could have anywhere near my eyes.

Has anyone else dealt with Rosacea in their eyes?

Thanks for any input.

[clioos]

Rosacea - Itchyeyes

Yes , I have Ocular Rosacea and Meibomian Gland Dysfunction.

I'm suffering a lot right now and have been for 4 months with severe stinging and burning bouts in my eyelids. I just feel unwell (like a virus). My doctor is not very approachable and seems to dread my being there. He placed me on Blephamide ointment every night at bedtime and said to use lots of warm compresses. I think this is wrong because it feels better to place cool compresses on both of my eyelids. So your doctor is probably on the right path or knows what is more comfortable.

Dr Latkany has been recommended on this website and I really wish I was closer to him or could address him on this website. I think I'm to new and can't get approval to post to professionals. His method of using only one drop and cutting out others sounds wise. This way he'll know what is or isn't working. It is also a good idea to use drops that are compounded so you have no interference from other chemicals within the drops.

I also have chemical sensitivities and am told this is a syndrome caused by chemical injury. This really scares me!!! I have difficulty getting anything to work in my eye and the doctor seems irritated with me.

What are some of your symptoms? I'm just curious if you get severe burning in the eye socket and lids to the point of feeling sick.

Hope all goes well for you and your doctor's methods place you on the right path.

Clio (In PA)

[itchyeyes]

Hi Clio,

It sounds like you should change doctors. I live on LI and I could have gone to see Dr. Latkany much earlier. I wish I had now. Maybe you can take a trip to NY to see him?

I do have burning and stinging frequently, and it is really bad at times (washing my eyelids can help this sometimes... but water in my eyes seems to irritate, even filtered water: basically I'm having hypersensitivity to anything in or touching my eyes). The stinging was worse I think maybe when this whole thing got started, but I think maybe that it's not as bad as yours from what you describe. My most distressful symptom is one of feeling like my whole eyeball is very dry and I have no tear film at all.. and also of feeling millions of tiny pin pricks on my eyeballs... it feels as though my cornei(not sure about the plural here) are eroding away... I'm relieved to know that they're not. This feeling comes and goes quite a bit, but it does seem to pass, sometimes for longer periods when I do compresses, drops and tranquil eyes...only to return again. Eating also seems to help a great deal. I drink plenty of water also. I felt like I was pretty much cured at some point in September, and then wham, the next day I woke up with severely dried out eyeballs...I had to use the heavy duty ointment for a couple of nights.

Like all chronic conditions if I focus mentally when I'm feeling a little better and even when I'm not sometimes, I can sort of mentally cause myself to feel better.

I do have many chemical sensitivities also... and I feel that the drops cause the burning a lot of the time... unfortunately Dwelle is the drop that helps the most and it has a preservative. I'm wondering why since it is made with people with so many various eye problems in mind that a preservative was added to it?

So far I have used nothing but ice and the steroid drop since last night as well as tranquil eyes and so far so good. I plan to use blink preservative free if I need to.

These are my symptoms overall: burning, stinging, itching, swelling and some redness in upper lids, redness in eyeballs(white area) at times, feeling of severe dryness in eyes, blurring of vision, light sensitivity, feeling of no tears in eyes at times, discharge on lashes although this has gotten much better since using dandruff shampoo, discharge from eyes in the morning... these may be caused in part by Dwelle and tranquil eyes now... I'm not sure, but Dwelle does make a coating of gunk on my lashes which is difficult to wash off.

I do not have roseacea on my face btw.

Please let me know other details of what your symptoms are etc. and what you have tried if you like. :-)

ps. I do have other autoimmune symptoms and eating tomatoes in particular causes my eyes to flare as well as other problems... and I have that feeling of a virus at times too.

Here is a link posted here in another post regarding Rosacea treatment.

http://www.eyeworld.org/article.php?sid=4175

[clioos]

Itchyeyes,

While it is comforting to hear someone else has some of the same symptoms, I really wish we were all well. This is like a wonderful support group.

Just to touch base with you regarding my symptoms; I have swelling (especially the left eyelid), stinging bouts like the pins and needles you were talking about, burning, and overall soreness. My left eye is worse. I think the stinging bouts are like corneal erosions because I've had those in the past, but the doctor says this time that's not the case. I also have Meibomian Gland Dysfunction. I am fearful that they are damaged. Minocycline helped off and on with this for 3-4 years but then stopped working. Not sure why. In addition, certain foods (cooking wines, red wine vinegar, and mustard) and medications really disturb the tissue of my eyelids creating the above mentioned symptoms.

I guess this is all related to dryness and inflammation. I can never tell which occurs first. Does the dryness cause the inflammation or does the inflammation cause the dryness!!! (Chicken or egg theory).

Anyway, I blame it on the Ocular Rosacea (which btw, I do not have on my face either) but sometimes I wonder if it is the chemical sensitivities. Strange the way it occurs in bouts though. Do your stinging bouts occur at any particular time of the day?

I would like to make another trip to New York. We do that about every 2 years. Since we are in the capital area of PA it is only a 2 to 3 hour drive.
It's just taking the time to do so. Well, maybe soon.

Keep me posted as to your results. I'm truly interested and thank you for responding to my post.

Clio

[itchyeyes]

Hi Clio,

2-3 hours is no time at all. I would make the trip asap. It took me no time at all to get an appointment. This is your health, nothing is more important than that, make the time and do it right away.

My stinging bouts seem to occur at random times, sometimes toward the end of the day if I haven't washed my hair that day, if I haven't done one eye cleansing or if there is an external irritant, or if I'm getting drier. They don't seem to occur when I eat food, although when I eat tomatoes my eyes generally swell, sometimes much worse than others though depending it seems on the acidity of the tomatoes and in turn they sometimes get drier at that point also. Nutra Tears made my eyes sting like crazy and produced more dryness, so I'm guessing something in them, maybe the dye, caused a flairing of the rosacea.

For me the inflammation seems to have started before the dryness... I had conjunctivitis with lid involvement. I was eventually diagnosed as having Blepharitis(I“m not sure if this a condition in itself...because it also seems to be involved in Rosacea and so many other eye conditions) treated with tobradex ointment which helped me the most. I didn't feel enough improvement and then tried azacite. After 7-8 days on azacite my eyes became severely dry, that was the start of my severe dry eye... it had only been mild and intermittent until that point.


How were you diagnosed as having rosacea? And how did they know you have meibomian gland disfunction?

ps. I have dealt with and still deal with 2 other chronic conditions which caused a considerable amount of pain, but this is the worst. I hope we will all be better soon.

[Brighteyes]

itchyeyes,

I was also diagnosed with rosacea after being diagnosed with blepharitis (rosacea didn't set in until much later). Btw the term "blepharitis" is non-specific and covers all forms of inflammatory eyelid conditions. In regards to your stopping the hot compresses, I can see the reasoning (so you don't agravate the surrounding skin), but I don't necessarily agree with the advice. However, Dr. Latkany is slightly more qualified to speak to that than I am Anyways, if you need more info on rosacea you should check out http://www.rosaceagroup.org/The_Rosacea_Forum/

[itchyeyes]

Thanks Bright Eyes,

I've bookmarked that link and will read there. I do still get some heat on my eyes when showering so I think I will just stop the heat... I feel slightly better already with two days of ice and the steroid drops(Alrex). I do have more burning with them a times but I do tend to have a low level burning a lot of the time anyway.

I did find that the heat was aggravating me, especially when it was warmer and ice always felt better, so maybe that is better for me. Do you have any irritation with heat?

And yes, I'm going to follow his intructions to a T because he must know what he's doing. It may be that once the inflammation has reduced I will be able to add some heat back if it's needed. :-)

[Brighteyes]

My only real intolerance is direct sunlight. At one point I thought hot compresses were aggravating my rosacea but I no longer feel thats true. In fact, recently I've been soaking a towel in epsom salt solution and wrapping it around a microwaved rice baggy for my hot compresses - I've seen a good deal of improvement in both my eyes and skin (also pour epsom salt solution over my face afterwards). You should probably follow Dr. Latkany's advice for now until you figure out what works for you and what doesn't.

[itchyeyes]

My only real intolerance is direct sunlight. At one point I thought hot compresses were aggravating my rosacea but I no longer feel thats true. In fact, recently I've been soaking a towel in epsom salt solution and wrapping it around a microwaved rice baggy for my hot compresses - I've seen a good deal of improvement in both my eyes and skin (also pour epsom salt solution over my face afterwards). You should probably follow Dr. Latkany's advice for now until you figure out what works for you and what doesn't.

I wonder why epsom salts work. Do you have Rosacea on your face as well as Ocular Rosacea? I have always had problems with sunlight and other types of light, I wear sunglasses practically all the time... even indoors depending on the type of light. Yes, I do feel the ice is wonderful... it also makes my eyes tear which feels wonderful, natural tears give me the best relief, unfortunately the relief is usually short lived. I guess in time I will figure out what works.... I'm going to eliminate all facial and haircare products that are scented now also... I have some that are scented which seem to be ok for me... but I think fragrance free will be better overall. The problem is it's hard if not impossible to control other people's perfumes/fragances. :-)

[Brighteyes]

itchyeyes,

I started noticing signs of skin rosacea about a year after developing ocular rosacea. I too wear sunglasses all the time - I find they not only help with the light sensitivity issue but also with the dryness (blocking wind - even wind created from walking slowly), not to mention the fact that they cover up my red eyes . Good luck!

[itchyeyes]

Thanks Bright Eyes...

I have been wearing panoptx and onion goggles, but they're painful due to the temples being so tight and I can only wear them for short periods and then I need to take a break. Still they do help. Good Luck to you too.

[mclaire66]

itchyeyes i'm interested to hear how you're doing as i've had similar experiences, i have been diagnosed with ocular rosacea aggravated by allergy, i went for allergy testing and found i am allergic to dust mites, am going for contact allergy testing as well--have you gone for allergy testing? or is your only condition the ocular rosacea (and resulting blepharitis)? are you doing anything else for it other than the alrex and the cold packs? while i feel like they help i know i can't be on the alrex forever and when i tried to back off them a month ago the inflammation came back and i had to go back on it so i don't understand how i can break this cycle and get off the alrex and have the inflammation not return--i will probably start allergy shots for the dust mite allergy but the allergist said it can take 6 months to feel the effects and i can't be on alrex for the next 6 months so i'm starting to worry...

[itchyeyes]

Alrex and Update

itchyeyes i'm interested to hear how you're doing as i've had similar experiences, i have been diagnosed with ocular rosacea aggravated by allergy, i went for allergy testing and found i am allergic to dust mites, am going for contact allergy testing as well--have you gone for allergy testing? or is your only condition the ocular rosacea (and resulting blepharitis)? are you doing anything else for it other than the alrex and the cold packs? while i feel like they help i know i can't be on the alrex forever and when i tried to back off them a month ago the inflammation came back and i had to go back on it so i don't understand how i can break this cycle and get off the alrex and have the inflammation not return--i will probably start allergy shots for the dust mite allergy but the allergist said it can take 6 months to feel the effects and i can't be on alrex for the next 6 months so i'm starting to worry...

Hi,

I have gone for allergy testing, I tested postive for 3 types of grass pollen. I have asthma and I know that I'm allergic to dust and many other things due to my reaction to them, so I found that the allergy testing was not reliable or very helpful for me. Dr. Latkany agreed with this.

I also did allergy patch tests to see if I'm allergic to the preservatives in the drops I'm using. I was tested for many other possible allergens including many of my own cosmetics and to be honest this was a waste of time. It's very costly(fortunately my insurance covered it) and quite time consuming as well as uncomfortable and again the results are not reliable. They're only 70% accurate. If I were you, I would reduce dust mites and anything else you react to in your environment with good pillow/mattress covers, vacumn as often as you can, wash sheets and bedding often, remove wall to wall carpeting if possible, dust furniture etc. When I reduce or limit allergen contact I feel better. This has helped me with my allergy symptoms and with my eyes also. I believe my rosacea is aggravated by allergy also like yours. I actually think there is a relationship between allergies and autoimmune conditions. I read an article about this a few years ago.

I also try not to eat foods that I react to such as tomatoes and citrus foods. My food reactions are not consistent except for tomatoes and citrus, but there are other foods I limit also, such as chocolate, alcohol, vinegar and very spicy foods. I drink as much water as possible and I take various supplements including Cod Liver Oil. I don't eat any meat or animal by products now with the exception of fish which Dr. Latkany recommended to add back into my diet. I'm also following the anti-inflammatory diet as much as possible which is outlined in Dr. L's book: high omeg3 vs omega6. A friend who also has dry eye found that drinking a few tablespoons of olive or flax seed oil with her meals has helped a great deal.

I have been using Alrex now for 3 months or so and I'm about 50% better and feeling much better. I've also started using Cromilyn drops which seem to be helping as well. I saw Dr. Latkany about 2 weeks ago and he agrees that everything looks much better. The pressure is normal in my eyes and Alrex is a very mild steroid solution, I'm using 2% solution. Dr. Latkany feels it is safe to continue and my condition was/is bad enough for me to continue. He suggested to try to use Alrex only once a day or so or not at all if I'm having a good day. I had both my drops compounded without preservatives recently. Alrex has to be diluted from 4% to 2%: since it's patented, the pharmacy can't get the ingredients to properly compound it. This will reduce the preservative to almost 0 according to the pharmacist.

These are the other things I do which have helped me tremendously:
Ice cubes wrapped in a tissue applied to my eyes for 30- 60 secs or so 2-3 x per day and when I feel follicles developing due to reaction to something. Wash hair daily with dandruff shampoo which contains zinc pyrithione(I'm going to make my own unscented shampoo and skin care products without fragrance. I may market them eventually). Use products which are unscented as much as possible. Tranquil eyes with cool water every night, I use Dwelle just before. Dwelle as needed and Blink preservative free tears as needed( I'm usually using Dwelle once per day now since starting Alrex). Humidifier and or vaporizer in the bedroom at night. Wash lids with Ocusoft extra strength foam in the shower and extraction/massage of eye lids. This is the only time I use heat, and never directly on my eyes. I also use cetaphil as a facial cleanser and on my eyes. I tissue it off and don't rinse. Panoptyx glasses as much as possible. Panoptyx Viento are a perfect fit for me and although they were tight and uncomfortable at first stretching the temple a tiny bit and wear has made them more comfortable. Limiting light in my environment also seems to help me a great deal and I've always been light sensitive. I was doing eye exercises but this gave me migraines so I've stopped for now. But they also did help my dryness a bit.

I have mild facial rosacea now also and I'm treating that with ketaconazole cream but not daily as it is very drying. My main symptom is severe dryness, which I've never had before. I'm using Shikai moisturizer with Borage and other oils, Albolene and a sunscreen moisturizer with only titanium dioxide(most other sunscreens irritate me too much and I read that this is the least drying of all suncreens). I also use amber light on my face and eyes. You can apply it for 20 seconds to your eyes(eyes closed). Blue light is supposed to help rosacea so I may try this eventually. There are no studies as to how the light affects your eyes though so please read about this before trying it if you think it's something you're interested in.

I hope some of this will help you. Please feel free to email me.

IE

[msienkiewicz]

I am self diagnosed with occular rosecea. I am very fair and definitely have facial rosecea, and I am so confused. I did azasite for a month on my lid margins, and I believe that burned out my glands further. I have not recovered in my opinion from using azasite. I believe I have allergies to all the preservatives especially BAK and everytime I go to the dr. I feel worse.

Warm compresses, hot compresses, cold compresses, lid scrubs - every dr. has told me something different, and I continue to deteriorate. I have no oil coming out at all. I don't know what to do. It doesn't seem to make any difference at all warm or cold.

The last dr. gave me no direction; he just said to make myself comfortable using artificial tears and lacriserts so now, I seek another. I can't just roll over and give up on this. There has to be something else to try. He didn't want to give me steroids or doxy....so what to do.

I am on restasis almost three months now- limited improvement at best.

Do I do warm and cold compresses and cancel each other out?

Melissa

[Lucy]

Melissa, no I don't think the warm and cold compresses cancel each other. Someone else might disagree, though :-).........What we do know is that it's not going to hurt you to do compresses a couple of times a day. If that was the case, I'd be blind. I think the warm/hot compresse opens things up and helps to keep it flowing. That's where the lid massage comes in after warm compresses.

Earlier in my dry eye saga, I was still working with burning eyes and terrible vision thanks to Lasik. I was a secretary in the president's office of a college. On my breaks and lunch, I would take a little blue ice gelpack and wrap in a cloth and cover my eyes for as long as I could. When I did this, I could not feel the pain. Obviously, I couldn't do that all day and work too! As soon as I got home, I was on the couch with my icepack. Most of my time not working was spent like that. No one told me to do ice packs, or cold compresses. I guess I invented my ice-eyepacks myself. It gave me such immediate relief, that became my salvation for a few minutes. I do think the ice or cold packs helps tone down inflammation which we all seem to have. Even if you applied a cold (or warm) compress during the day several times for relief, it should not harm you. I hope you find relief soon.
Lucy