various questions and comments

[Guest guest]

Hi all:

A few questions plus long history, all opinions welcomed:

-when studies are quoted as " xyz medication/treatment resulted in

total clearance in abc weeks " what do researchers define " clearance " as?

-if topical cortisones are so awful for rosacea long-term, why are

they so widely prescribed long-term?

-are there any wide studies done on the effectiveness of photoderm?

if anyone has any specific journal article references, I would love to

have them, thank you.

-bumpy rosacea skin. does rosacea cause the bumpy skin, and it

doesn't matter what topical concoctions are applied or not applied,

the skin is just going to be bumpy and that's the way it is? or can

one have rosacea and expect to have smooth skin/no bumps, if only the

right moisturizer/medication/sunblock/etc is discovered and used?

I am at about week ten into treatment. Prediagnosis, was using

desonide every other day for a year previously (was diagnosed a year

ago with " contact dermatitis " ). Now taking erythromycin 250mg po bid.

Washing with Olay Sensitive Skin foaming wash twice daily,

Metrocream twice daily. Olay Moisturizing Fluid on one half of face,

Gold Bond for sensitive skin on other half. So far the Gold Bond side

is looking better than the Olay side in regards to the bumps, but not

by much; burning/stinging/itching is worse on Olay side, but still

present on Gold Bond side. The itching wakes me up at night, it is my

constant companion. Used Protopic twice daily when first diagnosed

with rosacea, tapered down to using it once every 6-7 days now.

Taking Allegra and Motrin and essential fatty acid supplements. I

spend most of my time indoors because of work anyway, but when it's

overcast out I use Clinique Super City block, which seems to do no

harm, and when it's very bright out, I use Ti-Silc sheer which I think

is slightly irritating but it does seem to keep me from turning beet

red in the sun. I have chronic redness on my cheeks which does not

look horrid but does not look normal either - I'll send my picture in

one of these days. I do not have major episodes of angry red flushing

as some have described EXCEPT when I have any amount of alcohol. Even

a couple of sips made my face feel like it's on itchy fire and it

looks like it, too. Been avoiding that trigger ever since.

I have an appointment with the dermatologist in a few weeks. At that

time, I plan on discussing a change in treatment. I'm allergic to

tetracyclines so I'm thinking either low dose accutane, or

azithromycin. Also want to find out my HMO's position on whether or

not they will cover any part of photoderm at all.

The pictures that people have posted: hey, you all have rosacea, but

you know what? You're all good looking people, too, darn it!

If anyone has any suggestions or comments on what additional I can do,

I'd love to hear them, please! One last comment from me: one of my

most favorite things is to spend a nice summer day out in the

backyard, drinking a beer and leaning over the Weber grilling up

something tasty and spicy. There has to be something that I can do

that can make that a fun experience for me again, and I am going to

find it.

Theresa

[Guest guest]

> -when studies are quoted as " xyz medication/treatment resulted in

> total clearance in abc weeks " what do researchers

> define " clearance " as?

You're right, that's a key questions each study must define for

itself, and the strength of the study depends upon how well it

defines it.

In most skin studies I've seen, all participants in the study must

have at least x number of pimples (For example, I believe in one of

the rosacea studies, the minimum number of pimples was 15).

Total clearance at the end of the study would be zero pimples, but

that's really hard to quantify for most skin studies, so most group

total and near-total clearance, and put the cutoff as something like

2 or fewer pimples.

% of improvement is also individualized; for example, if a person

starts off with 20 pimples and ends up with 5 pimples, that's a 75%

improvement. If more than 50% of all participants have a 75% or

better improvement, that's how it's reported.

> -if topical cortisones are so awful for rosacea long-term, why are

> they so widely prescribed long-term?

I don't know that they are widely prescribed long-term, in my

experience they're more commonly prescribed short term during initial

treatment.

But use of any medication is a risk/benefit thing. Far and away, the

best topical anti-inflammatory agent available today is topical

steroids -- it effectively inhibits inflammation from any cause.

There's lots of hope for safer and equally effective anti-

inflammatory agents in the near future. For example, the early ones

(Protopic, Eidel) are hot topics on this list -- I see you're using

one -- but most physicians feel they need more study to determine

their risk/benefit profile, for all skin types and for rosaceans in

particular. It will take time, but I suspect in 5-10 years we'll have

safer, better options than the topical steroids.

But for today, for those rosaceans where the problems and risks of

chronic inflammation are worse than the known risks from topical

steroids (thinning skin, etc) they remain the best option for

longterm control.

[This is distinct from short term use or intermittent use of topical

steroids, which does not cause those side effects but are not ideal.

This is also distinct from the steroid-induced rosacea. We're talking

here about the use of topical steroids in someone already diagnosed

with rosacea, and whose inflammatory can't be managed successfully

with any other treatment.]

> -bumpy rosacea skin. does rosacea cause the bumpy skin, and it

> doesn't matter what topical concoctions are applied or not applied,

> the skin is just going to be bumpy and that's the way it is? or can

> one have rosacea and expect to have smooth skin/no bumps, if only

> the right moisturizer/medication/sunblock/etc is discovered and

> used?

I think of the bumpy skin as part of the chronic inflammatory

response. (I got rid of my bumps, but it was the very last thing to

go, and every now and again sections of my face threaten to bump up

again, if you know what I mean. )

I agree with the " less is more " philosophy, and I agree with Matija's

thread about the " right " skin products may well be those without

irritants, hidden or overt, so that the oral and topical medications

can do their best work.

My personal maintance goal is to decrease my skin's chronic

inflammation and encourage remission as much as possible, to decrease

the frequency and intensity of acute inflammationary exacerbations as

much as possible, and to get my skin as healthy as possible. I'm not

looking at treating a particular aspect of rosacea, I'm taking a

broader view of my own care.

I just don't think we can expect anything from rosacea -- though,

just as others can't expect anything from their chronic conditions.

That's just life with a human body on the planet Earth.

> If anyone has any suggestions or comments on what additional I can

> do, I'd love to hear them, please!

I appreciate your history, Theresa. Two things come to mind: first,

you might try using SuperCity Block even when the sun is shining.

Personally, I'm not convinced that there's enough of a difference

between spf of 25 and spf of 60, for two reasons: first, spf only

measures UVB, and I wonder if UVA is as or even more concerning for

rosaceans, and second, the difference between 25 and 60 isn't all

that great, just a few percentages of coverage. I would think

reapplying a non-irritating but weaker sunblock is better for skin

than applying a stronger but irritating sunblock once.

Second, for me itching is a sign of product irritation. Especially if

it occurs just at night, you might re-evaluate what you're putting on

your face at night. Even the most gentle of products. Again, I think

Matija is right when she says that just because something is promoted

as " for sensitive skin " doesn't make it so. For example, my face

burns when I apply Olay Sensitive Skin Active Beauty Fluid.

> One last comment from me: one of my

> most favorite things is to spend a nice summer day out in the

> backyard, drinking a beer and leaning over the Weber grilling up

> something tasty and spicy. There has to be something that I can do

> that can make that a fun experience for me again, and I am going to

> find it.

Alcohol-free beer, and a Forman grill? I know, I know, it's

not EXACTLY the same thing.

Take care,

Marjorie

Marjorie Lazoff, MD

[Guest guest]

> -when studies are quoted as " xyz medication/treatment resulted in

> total clearance in abc weeks " what do researchers

> define " clearance " as?

You're right, that's a key questions each study must define for

itself, and the strength of the study depends upon how well it

defines it.

In most skin studies I've seen, all participants in the study must

have at least x number of pimples (For example, I believe in one of

the rosacea studies, the minimum number of pimples was 15).

Total clearance at the end of the study would be zero pimples, but

that's really hard to quantify for most skin studies, so most group

total and near-total clearance, and put the cutoff as something like

2 or fewer pimples.

% of improvement is also individualized; for example, if a person

starts off with 20 pimples and ends up with 5 pimples, that's a 75%

improvement. If more than 50% of all participants have a 75% or

better improvement, that's how it's reported.

> -if topical cortisones are so awful for rosacea long-term, why are

> they so widely prescribed long-term?

I don't know that they are widely prescribed long-term, in my

experience they're more commonly prescribed short term during initial

treatment.

But use of any medication is a risk/benefit thing. Far and away, the

best topical anti-inflammatory agent available today is topical

steroids -- it effectively inhibits inflammation from any cause.

There's lots of hope for safer and equally effective anti-

inflammatory agents in the near future. For example, the early ones

(Protopic, Eidel) are hot topics on this list -- I see you're using

one -- but most physicians feel they need more study to determine

their risk/benefit profile, for all skin types and for rosaceans in

particular. It will take time, but I suspect in 5-10 years we'll have

safer, better options than the topical steroids.

But for today, for those rosaceans where the problems and risks of

chronic inflammation are worse than the known risks from topical

steroids (thinning skin, etc) they remain the best option for

longterm control.

[This is distinct from short term use or intermittent use of topical

steroids, which does not cause those side effects but are not ideal.

This is also distinct from the steroid-induced rosacea. We're talking

here about the use of topical steroids in someone already diagnosed

with rosacea, and whose inflammatory can't be managed successfully

with any other treatment.]

> -bumpy rosacea skin. does rosacea cause the bumpy skin, and it

> doesn't matter what topical concoctions are applied or not applied,

> the skin is just going to be bumpy and that's the way it is? or can

> one have rosacea and expect to have smooth skin/no bumps, if only

> the right moisturizer/medication/sunblock/etc is discovered and

> used?

I think of the bumpy skin as part of the chronic inflammatory

response. (I got rid of my bumps, but it was the very last thing to

go, and every now and again sections of my face threaten to bump up

again, if you know what I mean. )

I agree with the " less is more " philosophy, and I agree with Matija's

thread about the " right " skin products may well be those without

irritants, hidden or overt, so that the oral and topical medications

can do their best work.

My personal maintance goal is to decrease my skin's chronic

inflammation and encourage remission as much as possible, to decrease

the frequency and intensity of acute inflammationary exacerbations as

much as possible, and to get my skin as healthy as possible. I'm not

looking at treating a particular aspect of rosacea, I'm taking a

broader view of my own care.

I just don't think we can expect anything from rosacea -- though,

just as others can't expect anything from their chronic conditions.

That's just life with a human body on the planet Earth.

> If anyone has any suggestions or comments on what additional I can

> do, I'd love to hear them, please!

I appreciate your history, Theresa. Two things come to mind: first,

you might try using SuperCity Block even when the sun is shining.

Personally, I'm not convinced that there's enough of a difference

between spf of 25 and spf of 60, for two reasons: first, spf only

measures UVB, and I wonder if UVA is as or even more concerning for

rosaceans, and second, the difference between 25 and 60 isn't all

that great, just a few percentages of coverage. I would think

reapplying a non-irritating but weaker sunblock is better for skin

than applying a stronger but irritating sunblock once.

Second, for me itching is a sign of product irritation. Especially if

it occurs just at night, you might re-evaluate what you're putting on

your face at night. Even the most gentle of products. Again, I think

Matija is right when she says that just because something is promoted

as " for sensitive skin " doesn't make it so. For example, my face

burns when I apply Olay Sensitive Skin Active Beauty Fluid.

> One last comment from me: one of my

> most favorite things is to spend a nice summer day out in the

> backyard, drinking a beer and leaning over the Weber grilling up

> something tasty and spicy. There has to be something that I can do

> that can make that a fun experience for me again, and I am going to

> find it.

Alcohol-free beer, and a Forman grill? I know, I know, it's

not EXACTLY the same thing.

Take care,

Marjorie

Marjorie Lazoff, MD

[Guest guest]

> -when studies are quoted as " xyz medication/treatment resulted in

> total clearance in abc weeks " what do researchers

> define " clearance " as?

You're right, that's a key questions each study must define for

itself, and the strength of the study depends upon how well it

defines it.

In most skin studies I've seen, all participants in the study must

have at least x number of pimples (For example, I believe in one of

the rosacea studies, the minimum number of pimples was 15).

Total clearance at the end of the study would be zero pimples, but

that's really hard to quantify for most skin studies, so most group

total and near-total clearance, and put the cutoff as something like

2 or fewer pimples.

% of improvement is also individualized; for example, if a person

starts off with 20 pimples and ends up with 5 pimples, that's a 75%

improvement. If more than 50% of all participants have a 75% or

better improvement, that's how it's reported.

> -if topical cortisones are so awful for rosacea long-term, why are

> they so widely prescribed long-term?

I don't know that they are widely prescribed long-term, in my

experience they're more commonly prescribed short term during initial

treatment.

But use of any medication is a risk/benefit thing. Far and away, the

best topical anti-inflammatory agent available today is topical

steroids -- it effectively inhibits inflammation from any cause.

There's lots of hope for safer and equally effective anti-

inflammatory agents in the near future. For example, the early ones

(Protopic, Eidel) are hot topics on this list -- I see you're using

one -- but most physicians feel they need more study to determine

their risk/benefit profile, for all skin types and for rosaceans in

particular. It will take time, but I suspect in 5-10 years we'll have

safer, better options than the topical steroids.

But for today, for those rosaceans where the problems and risks of

chronic inflammation are worse than the known risks from topical

steroids (thinning skin, etc) they remain the best option for

longterm control.

[This is distinct from short term use or intermittent use of topical

steroids, which does not cause those side effects but are not ideal.

This is also distinct from the steroid-induced rosacea. We're talking

here about the use of topical steroids in someone already diagnosed

with rosacea, and whose inflammatory can't be managed successfully

with any other treatment.]

> -bumpy rosacea skin. does rosacea cause the bumpy skin, and it

> doesn't matter what topical concoctions are applied or not applied,

> the skin is just going to be bumpy and that's the way it is? or can

> one have rosacea and expect to have smooth skin/no bumps, if only

> the right moisturizer/medication/sunblock/etc is discovered and

> used?

I think of the bumpy skin as part of the chronic inflammatory

response. (I got rid of my bumps, but it was the very last thing to

go, and every now and again sections of my face threaten to bump up

again, if you know what I mean. )

I agree with the " less is more " philosophy, and I agree with Matija's

thread about the " right " skin products may well be those without

irritants, hidden or overt, so that the oral and topical medications

can do their best work.

My personal maintance goal is to decrease my skin's chronic

inflammation and encourage remission as much as possible, to decrease

the frequency and intensity of acute inflammationary exacerbations as

much as possible, and to get my skin as healthy as possible. I'm not

looking at treating a particular aspect of rosacea, I'm taking a

broader view of my own care.

I just don't think we can expect anything from rosacea -- though,

just as others can't expect anything from their chronic conditions.

That's just life with a human body on the planet Earth.

> If anyone has any suggestions or comments on what additional I can

> do, I'd love to hear them, please!

I appreciate your history, Theresa. Two things come to mind: first,

you might try using SuperCity Block even when the sun is shining.

Personally, I'm not convinced that there's enough of a difference

between spf of 25 and spf of 60, for two reasons: first, spf only

measures UVB, and I wonder if UVA is as or even more concerning for

rosaceans, and second, the difference between 25 and 60 isn't all

that great, just a few percentages of coverage. I would think

reapplying a non-irritating but weaker sunblock is better for skin

than applying a stronger but irritating sunblock once.

Second, for me itching is a sign of product irritation. Especially if

it occurs just at night, you might re-evaluate what you're putting on

your face at night. Even the most gentle of products. Again, I think

Matija is right when she says that just because something is promoted

as " for sensitive skin " doesn't make it so. For example, my face

burns when I apply Olay Sensitive Skin Active Beauty Fluid.

> One last comment from me: one of my

> most favorite things is to spend a nice summer day out in the

> backyard, drinking a beer and leaning over the Weber grilling up

> something tasty and spicy. There has to be something that I can do

> that can make that a fun experience for me again, and I am going to

> find it.

Alcohol-free beer, and a Forman grill? I know, I know, it's

not EXACTLY the same thing.

Take care,

Marjorie

Marjorie Lazoff, MD