Initial diagnosis was ocular rosacea

[Guest guest]

jshantisafari wrote: << I have read that about 20% of persons with rosacea

first present with ocular symptoms. ... What percentage of those first

presenting with ocular rosacea go on to develop skin involvement? >>

About three years ago, while on vacation, I developed an agonizing case of

photophobia, developed eyelid puffiness, couldn't tolerate contact lenses

any more, and even my glasses would no longer correct my vision.

My primary physician prescribed antibiotic eyedrops, then, when those didn't

work, referred me to an ophthalmologist. They used some other eyedrops for a

brief period (steroids, I think), then inserted lower punctal plugs and

started me on oral antibiotics. At this stage, they were treating it as a

severe case of dry eye. One ophthalmologist even claimed that 15 years of

contact lens use had totally destroyed my corneal stem cells.

During one visit, a staff ophthalmologist I hadn't seen before examined my

eyes. He *immediately* diagnosed my condition as ocular rosacea -- and then

proceeded to point out several tell-tale skin manifestations (minor nasal

redness and some telangiectasia) to the residents in the exam room.

My family has a history of rosacea, and, being in my mid-40s, I knew to

watch out for it. But I hadn't really been aware of there being an ocular

component until the diagnosis. I guess this is a case where the art of

medicine, rather than the science, led to the diagnosis. :-)

In fact, even after the rosacea diagnosis, I've noted that many

ophthalmologists I see at the clinic tend to dismiss rosacea as the cause

and need to be convinced of the diagnosis.

My dermatologist has an interesting theory, as well. When this all flared

up, she acknowledged that I *did* indeed have rosacea, but she was convinced

that the ocular problems also could be an early manifestation of cicatricial

pemphigoid, a condition usually seen in elderly patients. She took skin

samples from several places on my body, ran tests, and confirmed the

existence of antibodies associated with cicatricial pemphigoid.

The dermatologist suggested treatment with Cytoxan and Prednisone. I

ultimately decided against this, but did accept her secondary suggestion --

which was that because I already was taking 2,000 mg of tetracycline a day

that I also take 2,000 mg of a non-flushing niacin formula. This combination

has apparently had some success in treating the condition.

End result is that now my eyes are basically OK, and my skin, while still

slightly red, is largely under control. I have a couple of telangiectasias

that I smear coverup on when I'm feeling self-conscious, but other than

that, I'm largely under control.

My only frustration is that I can't wear contact lenses like I used to. I've

been cleared to wear them for extremely limited periods (playing sports,

etc.), but that's about it. These are standard Acuvue disposables. I'm

wondering whether the new contacts for dry eyes might work better; does

anyone here have any experience with this?

Leigh Hanlon

Chicago, USA

[Guest guest]

jshantisafari wrote: << I have read that about 20% of persons with rosacea

first present with ocular symptoms. ... What percentage of those first

presenting with ocular rosacea go on to develop skin involvement? >>

About three years ago, while on vacation, I developed an agonizing case of

photophobia, developed eyelid puffiness, couldn't tolerate contact lenses

any more, and even my glasses would no longer correct my vision.

My primary physician prescribed antibiotic eyedrops, then, when those didn't

work, referred me to an ophthalmologist. They used some other eyedrops for a

brief period (steroids, I think), then inserted lower punctal plugs and

started me on oral antibiotics. At this stage, they were treating it as a

severe case of dry eye. One ophthalmologist even claimed that 15 years of

contact lens use had totally destroyed my corneal stem cells.

During one visit, a staff ophthalmologist I hadn't seen before examined my

eyes. He *immediately* diagnosed my condition as ocular rosacea -- and then

proceeded to point out several tell-tale skin manifestations (minor nasal

redness and some telangiectasia) to the residents in the exam room.

My family has a history of rosacea, and, being in my mid-40s, I knew to

watch out for it. But I hadn't really been aware of there being an ocular

component until the diagnosis. I guess this is a case where the art of

medicine, rather than the science, led to the diagnosis. :-)

In fact, even after the rosacea diagnosis, I've noted that many

ophthalmologists I see at the clinic tend to dismiss rosacea as the cause

and need to be convinced of the diagnosis.

My dermatologist has an interesting theory, as well. When this all flared

up, she acknowledged that I *did* indeed have rosacea, but she was convinced

that the ocular problems also could be an early manifestation of cicatricial

pemphigoid, a condition usually seen in elderly patients. She took skin

samples from several places on my body, ran tests, and confirmed the

existence of antibodies associated with cicatricial pemphigoid.

The dermatologist suggested treatment with Cytoxan and Prednisone. I

ultimately decided against this, but did accept her secondary suggestion --

which was that because I already was taking 2,000 mg of tetracycline a day

that I also take 2,000 mg of a non-flushing niacin formula. This combination

has apparently had some success in treating the condition.

End result is that now my eyes are basically OK, and my skin, while still

slightly red, is largely under control. I have a couple of telangiectasias

that I smear coverup on when I'm feeling self-conscious, but other than

that, I'm largely under control.

My only frustration is that I can't wear contact lenses like I used to. I've

been cleared to wear them for extremely limited periods (playing sports,

etc.), but that's about it. These are standard Acuvue disposables. I'm

wondering whether the new contacts for dry eyes might work better; does

anyone here have any experience with this?

Leigh Hanlon

Chicago, USA