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Re: [rosacea] Occular Rosacea

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  • dgarbin2000
    Lee, I purchased the The Original Bed Buddy Sinus Pack from Amazon for $9.95. I heat it in the microwave for 1 minute, but I cover it with a washcloth wet
    Message 1 of 41 , Jul 1, 2011

      I purchased the "The Original Bed Buddy Sinus Pack" from Amazon for $9.95. I heat it in the microwave for 1 minute, but I cover it with a washcloth wet with very warm water. I keep it on for 5 minutes. Works like a charm, keeps the heat, and I can wash the washcloth (the sinus mask can't be washed.) I purchased very thin washcloths and use them only for my eyes. I wash them in hot water, All Free and Clear, and use a 2nd rinse to make sure all of the detergent is rinsed out. The beads in the mask do breakdown since I use it 2x a day. I replace it after 6-9 months.

      I saw the most popular group of opthamologists here (north of Philly), who diagnosed OR, but did not treat it. Only treated the blepharitis and dry eye. Then I spent a day in the sun last summer, and it exploded! I went to an optometrist after being referred by a friend, who put me immediately on doxy (50 mg. capsules 2x a day). A friend was diagnosed in November with OR by her optometrist, and he immediately prescribed doxy, fish oil capsules, as well as warm compresses, etc. I had no idea that optometrists treated chronic conditions or could prescribe medicine. They seem to have a better handle on it that the opthamologists who are geared toward surgery. Optometrists can spend 45 minand he prescribed Azasite drops, which open up the meibomian glands because they were clogged.

      (I do take Culturelle probiotic--one capsule a day.) When I started on doxy, I noticed a slight improvement after one week (it took the edge off of the pain). I've been on it for one year, and noticed a big difference in April, so hang in there. It's gets better, but in small increments. It will take patience. I see the doc in August, and he is hoping we can reduce the doxy to 1x a day. I've tried skipping my nighttime pill, but I can only do it for one day before the eyes start acting up. We'll probably have to postpone the decrease. BTW, I have mild rosacea on my face. Didn't even know I had it until the eye doc diagnosed the ocular. Look for your triggers and try to avoid them to help the doxy. Mine are HEAT, sun, STRESS, exercise if I get my heart rate up, and in the beginning sugar. After a year, I notice I can now eat a cookie without my eyes going crazy. Haven't tried two cookies though!

      Beth, the University of Penna. opened a Dry Eye Center in May of 2010. I went down to make sure my optometrist was on the right track. They are incredible! They work with Dr. Latkany and Dr. Maskin on studies, the only two doctors who have written dry eye books for lay people. They prefer a high dosage of doxy to start--100 mg 2x a day. They also do not use Lotemax because it is so weak. They like to hit it hard for two weeks using a stronger steriod, and they they stop it. I saw the co-director Dr. Bunya. She was absolutely wonderful. The Azasite drops burn, and she suggested I just apply them to the lash line with a cue tip, which was a very helpful suggestion. They offered me other treatments such as androgen drops and autologus serum drops if my current routine doesn't work to my satisfaction. It is too far to travel for me to use them for my regular doctors, but it's nice to know they are there. Dr. Bunya actually thanked me for coming, and told me I was welcome back anytime. That was a big difference from the original opthamologist I saw here. I felt I was a nuisance to him. Thank heavens I found the optometrist who treats me.

      I also love the Ocusoft Lid Scrub. I purchase the larger bottle (7.25oz) which lasts pretty long. I keep one in the shower, and one in the medicine closet. I buy 4 bottles at a time, and they last me for one year.

      I can't imagine living in such a dry climate with this. I have to keep the humidity between 40-50% to be comfortable. This is tough during the winter. I have a humidifier in the bedroom and family room. Cool days in spring and fall are my favorites!

      My eyes are very manageable, as long as I am diligent with the routine. I can skip the hot compress once in a while, but I never skip the lid scrubs. I use Restasis 2x a day, which I can't ever skip. I use Systane or Systane Balance every 4-5 hours through the day. I use Systane Ultra High Performance and Systane Balance at bedtime, but if I get up through the night, I reapply. I even managed a successful vacation at the Jersey shore this summer! Used 30 SPF, stayed under the umbrella, and wore the sunglasses with the foam orbital seal.

      Hope this information helps, Lee. This group is a wonderful support.

      > Hi Lee,
      > You can also make those eye masks by using either rice or flax but I
      > wouldn't add any essential oils to them! If you're not happy with the
      > corneal specialist, I'd look for another doc. That¹s a good idea, to ask
      > your derm, especially if it¹s a derm you've been happy with, for
      > recommendations. That¹s how I got this OC specialist.
      > I've looked to see if there are any defining characteristics that show a
      > difference between ocular rosacea (OR) and blepharitis/dry eye and I can't
      > see that there are huge differences. The blepharitis/dry eye is usually a
      > part of OR and usually also includes oil gland, also called meibomian gland
      > dysfunction. Those are the glands that make the oily part of your tears and
      > it makes sense that they can get clogged with oil. Sometimes the doctor
      > will test the time for tears to break down which can show the severity of
      > dysfunction and if you're improving with treatment. I'm thinking that if
      > you have rosacea on your face or chest and get eye symptoms, it's probably
      > ocular rosacea.
      > I happened to see this doc this week and she also suggested a kind of IPL in
      > which they bring the laser very very close to the eye but to the bottom eyelid
      > to stop the vessels from growing. But of course, insurance doesn't pay for
      > it. I told her if they were doing studies, please let me know. Sometimes
      > my eyes are so very red, I think I could be mistaken for a creature from a
      > horror movie, LOL!! I do have some visible vessels which have been there
      > since adolescence but they are part of the eyeball. If I knew how to get
      > those gone safely, I'd do it!! She also suggested using a small
      > "personal" humidifier in the bedroom at night when in an air conditioned environment
      > for the night to keep the eyes more moist. That might be an option for you.
      > It's very humid generally in Philly and I don't care for it all that much.
      > If I were in a dry environment, I may do better with several conditions . .
      > . . I'm so glad to have gotten a handle on the OC, I was getting so
      > frightened as it affected my eyesight. It was quite unpleasant last summer
      > and after several years of being told, no, it's not ocular rosacea, it's
      > allergies, it's dry eye. I kind of knew that it was indeed, ocular rosacea
      > but to try to get someone to take it seriously was so hard. It took me 4
      > years to get good treatment! I don't mean to be sexist here -- my experience
      > is that women derms & eye docs "get" it.
      > I did get Dr. Robert Latkany's book but the expert that helped the most was
      > OR specialist & contact lens lady. If anyone wants to have the book, let me
      > know off-list and I'd be happy to mail it to you.
      > Hope this helps!
      > Beth PB
    • Beth Phillips Brown
      Hi Lee, I think we have a tendency to want it to be one thing OR another. I¹m thinking it could be a combination of both or all of the factors. Thanks for
      Message 41 of 41 , Jul 13, 2011
        Hi Lee,

        I think we have a tendency to want it to be one thing OR another. I¹m
        thinking it could be a combination of both or all of the factors. Thanks
        for the info about this doc you mention. I¹d never heard of him or his book
        Glad that some of the suggestions offered are helping.

        Beth PB in humid Philly

        On 7/11/11 4:12 PM, "DAVID LEE DURHAM" <DDavleedurham@...> wrote:

        > Hi All,
        > I wanted to say thanks to everyone who answered my questions about Ocular
        > Rosacea and what exactly should I do about it. Dori I'm sorry that you've
        > been having a flare recently from tweaking your back. That's no fun. In fact
        > my husband hurt his back just over the weekend from a sneezing attack ! I
        > know that isn't funny, but yet somehow it is..... But when he has a sneezing
        > attack he has maybe 40 of them one right after the other. Anyway I hope your
        > back is feeling better. Thanks for all your suggestions about doxy and
        > Restasis.
        > Since I wrote I've been on doxy 2x day for 10 days only. The doxy doesn't
        > bother me a bit. At the same time I was using some steroid eye drops 2x day
        > for 5 days or so. They make my eyes feel pretty good and it's just to bad I
        > can't use it all the time as I love it. I also used my "sock" every night,
        > which felt great. I would heat it for about 10 sec and it would last for
        > about 15 minutes. I did that when I got into bed at night. Although I think
        > I'm going to switch to a childs' sock which is smaller and better suited to
        > just my eyes, not so much face. Also I've been cleaning my eyelids super
        > well at night and using drops in the morning when I get up and usually a
        > couple of times during the day. The leaky eye thing has stopped (for which
        > I'm thankful) and I can wear eye makeup again if I want to. One other thing I
        > did was to stop the antihistamines I was taking for allergies which I think
        > probably set off the whole thing. I had started taking an antihistamine
        > because I had nasal drainage in my throat causing me to cough and that's what
        > the pharmacist recommended. Now the coughing is back. Sigh..... So I'm just
        > drinking tons and tons of water hoping that might help some. I also read
        > "Reversing Dry Eye Syndrome" by Dr Maskin. I think Beth had talked about him
        > in one of her posts. Anyway it was interesting, but think I learned more from
        > this group than him, about actual dry eyes. NO offense Dr Maskin. The other
        > dry eye book is waiting for me to pick up at the library. I definitely don't
        > think my dry eye problem is horrible. It seems manageable, although I'm not
        > sure about wearing contacts again. Also I can see that probably having a
        > humidifier attached to my furnace for winter time may be a good idea. Oh and
        > I started on Restasis again 1x day, although I've been on it before and I
        > honestly don't know if it helped me. And it was for at least a year.
        > One thing that I'd like to ask people what they think about this. In Dr
        > Maskin's book he says most dry eye patients are women over the age of 50 (me).
        > They believe that the lack of androgens (testosterone) is directly related to
        > the whole dry eye thing. I do take a bit of testosterone in fact so I'm not
        > sure about that, but I know my dry eye problems did begin after age 50. So I
        > wonder is it the age thing, the hormone thing, or the Rosacea thing. What
        > does everyone else think?
        > Lee

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