There's no such thing as ocular rosacea!

[Leelah]

I went to see my derm today who does my botox injections. Before she did the usual injections, I was telling her that I feel like the botox injections are helping my ocular rosacea. I really do feel that my eyes are less red/irritated while on botox, and as the drug wears off, my eyes go back to their normal horrible state. The doctor then told me that there's no way botox can be a treatment for ocular rosacea as there's no such thing as ocular rosacea.

I'm so confused. My doctor is famous. She owns several clinics and everyone goes to her for botox injections and fillers + other treatments. She does an amazing job - and although she doesn't really spend that much time with her patients, I wouldn't get my botox done anywhere else. But how can a derm not know that there's such a thing as ocular rosacea? I was hoping she would be willing to inject some more botox around the eyes to see if we could reduce the symptoms of my ocular rosacea even further, but I didn't even dare to ask after what she said. Now what do I do?

[Rebecca Petris]

I'm so confused. My doctor is famous. She owns several clinics and everyone goes to her for botox injections and fillers + other treatments.... But how can a derm not know that there's such a thing as ocular rosacea?

She's not an ophthalmologist. Not that all ophthalmologists are familiar with it either, of course.

Now what do I do?

Well, you could ignore it and continue getting the injections for whatever reason you started getting them without talking about ocular rosacea... Or get her to google Ocular Rosacea. Maybe after she sees a gajillion links like this one from the Mayo Clinic she'll reconsider.

Definition
By Mayo Clinic staff
Ocular rosacea (roe-ZAY-she-uh) is inflammation of the eye that occurs as a result of rosacea, a chronic, inflammatory condition that affects the skin on your face, nose and forehead. Many people with skin rosacea develop ocular rosacea, usually in combination with skin symptoms, but occasionally ocular rosacea occurs by itself.

Ocular rosacea primarily affects adults between the ages of 30 and 60. Ocular rosacea is more common in people with fair skin and light hair and eye color.

Even if you have skin rosacea, you may not realize that your ocular rosacea symptoms, such as dry eyes, are connected to the condition. So it's a good idea to have your eyes checked by an eye doctor (ophthalmologist)....

[Guest]

Maybe at your next appointment, you could bring her a printout on ocular rosacea from somewhere like the Mayo Clinic site. Just be careful not to make her feel foolish for having previously said there's no such thing...

[Pinky]

Leelah,
The improvements you are experiencing are very possible. They have been using botox injected subcutaneously to treat rosacea facial flushing for many years now. I believe it was a doctor in Australia that developed the treatment protocol.

[LaDiva]

Some ophthalmologists give Botox injections. I've got ocular rosacea and read that Botox is sometimes used to treat the ocular form.

[PotatoCakes]

I stopped getting botox because I was afraid (hoping) it might be the cause of my dry eye. Of course, it didn't help which wasn't a surprise to my doctor (botox dr, not eye) although he was very supportive of me stopping if it made me feel better. I'm very interested in hearing how it might help ocular rosacea. Does anyone have information on this that I could bring my dermatologist?

[Leelah]

Dear Rebecca and SAAG - Thanks for your advice. I guess I just assumed a doctor would at least have heard of the condition. I'm not even sure she'll listen if I ask her to google ocular rosacea or if I bring her a print-out from the mayo website. She seemed extremely sure in her case - and telling her that she's wrong woud cause her to 'lose face.' I guess it's an Asian thing, but it would be really hard to find a way to let her know she's wrong without her hating me. I have found another doctor though, so I think I'm going to send him an email and ask if he's heard of the condition before I make an appointment.

Pinky, LaDiva and PotatoCakes - I've been trying to find some more information online about the direct effects of botox on ocular rosacea.. But I've only found a few paragraphs here and there. So if anyone has any links they'd like to share, I'd really appreciate it.

[LaDiva]

Hi Leelah,

You have probably pulled this link: http://health.groups.yahoo.com/group.../message/97535

This is all I really know about it. I've read all kinds of different things about Botox, including a statement that it may lead to dry eye. IPL is supposed to help ocular rosacea, as this is what the eye doctor told me. I am just learning about the ocular form of rosacea, and don't know much yet, but have had facial rosacea for years. What is so strange is that there is no sign of it on my face, and yet it has flared in my eyes. I believe it is probably the underlying factor to all of my dry eye problems. Sorry I don't know more! This is a friendly rosacea site: http://rosacea-support.org/

Good luck to you, Leelah.

[Rebecca Petris]

I have found another doctor though, so I think I'm going to send him an email and ask if he's heard of the condition before I make an appointment.

That's a great idea. You might include one or two PubMed links to help him pretend he already knew . Here's one from a recent one - it's rather obscure, but there are some links at the right to more.

[Guest]

You might include one or two PubMed links to help him pretend he already knew . .

That gave me a chuckle! But good advice... I think anyone would appreciate having a heads up so they're not caught off guard!

[Leelah]

LaDiva - Thank you. That was actually the first link I found regarding the use of botox to treat ocular rosacea, but I guess it's not enough to go by one person's experiences alone ;-) I feel like we're in a similar situation. I have ocular rosacea, but no sign of it on my face. What's up with that? It's so frustrating! I've visited http://rosacea-support.org/ several times trying to find posts related to ocular rosacea and botox.. but without much luck, I'm afraid.

Rebecca - Thank you. I'm sure the doctor will be "more than familiar with it" if I ask in advance and include those links ;-)

[Trac]

ocular rosacea

I found this on a web site today.

Rosacea blepharitis often is a component of ocular rosacea, which can cause eyelid inflammation linked to dysfunction of the skin's oil (sebaceous) glands. Acne rosacea is a common skin inflammation characterized by pimple-like bumps and facial redness — especially around the cheeks, nose, forehead and chin. As with certain forms of blepharitis, underlying causes of rosacea aren't well understood.
However, rosacea does appear to be linked to certain genetic tendencies and environmental factors, such as excessive sun exposure.
Clogged meibomian glands from posterior blepharitis also can cause a stye or chalazion to form. A stye, which is often uncomfortable, grows from an infected oil gland in the eyelid. A chalazion is a non-infected, usually painless nodule caused by inflammation of a blocked meibomian gland.

Here is the link: http://www.allaboutvision.com/condit...lepharitis.htm

[y-gwair]

I recently saw a dermatologist regarded as an authority on rosacea. As well as confirming that ocular rosacea does indeed exist, I found his explanation of the disorder very helpful.

He says that the underlying condition is primarily neuro-vascular. The capilliaries in the face can expand to take nearly 100 times their normal capacity. This is so that when the body is overheating, blood flow can be diverted to the surface of the skin to help cool the body down. However, sometimes the nerves that control the cooling process can become over stimulated and confused. The affected areas become flooded with blood, the vessels leak causing swelling/oedema and build up of pro-inflammatory substances. This inflammation can cause abnormal production from oil glands, and secondary bacterial infections. In his view, the best way to treat rosacea is to break the cycle by damping down the initial neural over-reaction (in my case he prescribed drugs called alpha blockers).

Botox works by blocking a neurotransmitter called acetylcholine from nerve endings; I think the main use has been to block nerves that cause facial sweating, but this is very closely related to the processes that cause facial flushing. There was an article in a newspaper that suggested when botox procedures were carried out for profuse facial sweating, they helped also helped flushing. However, I can't find any more information on this as a treatment specifically for rosacea, or ocular rosacea (or the results of the trial mentioned):

http://rosaceatreatments.blogspot.com/2005/02/using botox to control flushing

Essentially I think the botox treatment does much the same thing as an operation called a sympathectomy, which removes the sympathetic nerves which control cooling mechanisms of the face (sweating and increased bloodflow). Looking into this, it seems it has a lot of very horrible side effects so isn't recommended as a treatment.

I found this comment by someone who had botox treatment for flushing, doesn't sound very promising...
http://webcache.googleusercontent.co...w.google.co.uk

[Leelah]

Thank you for your input, Trac and y-gwair.

y-gwair: I've been reading about alpha blockers, and I'm wondering what kind you're taking and what dosage? Are they doing any good?

[y-gwair]

I've been reading about alpha blockers, and I'm wondering what kind you're taking and what dosage? Are they doing any good?

I've tried both Clonidine (25mcg 'Dixarit') and moxonodine 200mcg. Recommended dosage of Clonidine is 50mcg twice a day, Moxonodine 200mcg twice a day, but as my flushing is very severe I have found the moxonodine ineffective; Clonidine is more effective, but I have to take the maximum dose (200mcg) to keep from being permanently flushed; most people seem to be fine on lower doses. Derm also prescribed mirtazapine (tetracyclic antidepressant with alpha-blocking effect) to take in combination with moxonodine, but I can't tolerate it with my dry mouth.

These are the only drugs I've found at all effective for facial flushing/burning. I think they may be helping my eyes as well, as they more comfortable at the moment than they have been for many years (also started ciclosporin ointment at the same time, so difficult to tell which is having most effect on eyes).