Re: Are we expecting too much??

[Guest guest]

Yes, there is a fundamental shift in one's perspective when rosacea

is no longer viewed as an entity whose flares that can be controlled

if one can only figure out how, whose skin can be wonderful if one

can only find the right product, is fully understandable if one can

only grab hold of the right theory...To me, that puts the onus on the

person: if your skin doesn't look good it's your fault -- you aren't

trying enough products, you aren't taking the right vitamins, you're

too stressed -- if you flare it's because you did something wrong etc

etc etc.

As you say, that's just not reality. That kind of hope isn't

realistic hope, and the resultant letdown can feel painful to people

who are already suffering.

Marjorie

Marjorie Lazoff, MD

[Guest guest]

The National cea Society did mention a study in one of their more

recent newsletters stating that over 50% of patients treated with topical

Metronidazole were able to keep their cea in remission. (or something

to that effect.. not entirely sure on the details, as it has been several

months since I read it) However, the National cea Society is a good

resource, but they arent perfect... Im not sure if this number is accurate

or not. I did just come across a medical article discussing treatment of

patients using " A multicenter, randomized, investigator-blind, parallel

group trial conducted at 3 separate clinical sites located in 3 US cities.

The study enrolled 72 rosacea patients with at least 8 to 50 inflammatory

facial lesions (pustules and papules) and moderately severe facial erythema.

Patients were randomly assigned to receive either 0.75% metronidazole cream

or 1.0% metronidazole cream " that says:

" Results: The overall median percentage change in lesion count at end point

for patients in the 0.75% metronidazole cream treatment group was -62%

compared with -60% for the 1.0% metronidazole cream treatment group. The

overall percentage change in erythema scores at endpoint for patients in the

0.75% metronidazole cream treatment group was -26% compared with -30% for

patients in the 1.0% metronidazole cream treatment group. Regarding

physician assessment of global severity, 57% of subjects (20/35) in the

0.75% metronidazole cream group compared with 37% of subjects (13/35) in the

1.0% metronidazole cream group were rated as having a clear to mild

condition at end point. Both drugs were well tolerated; there was no

significant difference in the number of drug-related adverse events between

the two agents.

Somehow these numbers dont add up. The average clearance of erythema is

between 26-30% yet 57-37% of the patients were rated as mild/cleared at the

end? Anyway, I have probably come close to a 25% or so improvement in

redness using Noritate, so that seems about right, but I certainly wouldnt

consider that clearance..

[Guest guest]

> I would take comments such as the one about this support group's

> experience not being mainstream or typical (how would any one

> member know the experience of over 2000 members?? Especially since

> most of them do not even post!) with a huge grain of salt.

, your grain of salt can be the size of a mountain , but

that doesn't change the facts: there are an estimated 13 million

people with rosacea in the US alone, and many (16?) millions more in

Canada and Northern Europe, most of whom respond to conventional

medical treatment.

That's not to slight the millions who are not successfully managed,

including many if not most of the 2000+ members of this group. Quite

the contrary. To me, the question is why don't these people respond

to medical treatment like the majority of rosaceans -- what makes

them not mainstream, what makes them atypical.

> I am certain that there is a way for everyone to re-establish

> healthy skin - regardless of what " studies " indicate or not.

I don't believe that's a realistic expectation for many rosaceans.

Certainly with good management virtually all rosaceans can have

healthier skin, but with the understanding that exacerbations and

remissions may still be a part of their life.

Along with you, I wish there was a way for all rosaceans to re-

establish healthy skin. I wish everyone with multiple sclerosis could

re-establish a healthy neurological system. I wish, I wish, I wish...

Marjorie

Marjorie Lazoff, MD

[Guest guest]

You seemed to have missed my point, which was that your statement about the

experience of this group being atypical is really just an assumption on your

part that may or may not be accurate. Out of 2000+ plus members, only a

small number post regularly, so how would you know what the " group "

experience was in treating their rosacea? You are coming to conclusions and

posting them as " facts " when really they are just assumptions on your part.

(you could have said " the experience of this group is mainstream " and I

would still be making the same comment.)

On another related note, I think it's important to recognize that the points

of view you express seem to be limited to what " conventional medicine "

believes is possible, with " conventional medicine " being at the top of some

sort of hierarchy. While conventional medicine does a lot of good , it is

certainly not the be all, end all.

carrie

on 4/6/02 4:34 AM, emarjency at emarjency@... wrote:

>

>

>> I would take comments such as the one about this support group's

>> experience not being mainstream or typical (how would any one

>> member know the experience of over 2000 members?? Especially since

>> most of them do not even post!) with a huge grain of salt.

>

> , your grain of salt can be the size of a mountain , but

> that doesn't change the facts: there are an estimated 13 million

> people with rosacea in the US alone, and many (16?) millions more in

> Canada and Northern Europe, most of whom respond to conventional

> medical treatment.

>

> That's not to slight the millions who are not successfully managed,

> including many if not most of the 2000+ members of this group. Quite

> the contrary. To me, the question is why don't these people respond

> to medical treatment like the majority of rosaceans -- what makes

> them not mainstream, what makes them atypical.

[Guest guest]

You seemed to have missed my point, which was that your statement about the

experience of this group being atypical is really just an assumption on your

part that may or may not be accurate. Out of 2000+ plus members, only a

small number post regularly, so how would you know what the " group "

experience was in treating their rosacea? You are coming to conclusions and

posting them as " facts " when really they are just assumptions on your part.

(you could have said " the experience of this group is mainstream " and I

would still be making the same comment.)

On another related note, I think it's important to recognize that the points

of view you express seem to be limited to what " conventional medicine "

believes is possible, with " conventional medicine " being at the top of some

sort of hierarchy. While conventional medicine does a lot of good , it is

certainly not the be all, end all.

carrie

on 4/6/02 4:34 AM, emarjency at emarjency@... wrote:

>

>

>> I would take comments such as the one about this support group's

>> experience not being mainstream or typical (how would any one

>> member know the experience of over 2000 members?? Especially since

>> most of them do not even post!) with a huge grain of salt.

>

> , your grain of salt can be the size of a mountain , but

> that doesn't change the facts: there are an estimated 13 million

> people with rosacea in the US alone, and many (16?) millions more in

> Canada and Northern Europe, most of whom respond to conventional

> medical treatment.

>

> That's not to slight the millions who are not successfully managed,

> including many if not most of the 2000+ members of this group. Quite

> the contrary. To me, the question is why don't these people respond

> to medical treatment like the majority of rosaceans -- what makes

> them not mainstream, what makes them atypical.

[Guest guest]

You seemed to have missed my point, which was that your statement about the

experience of this group being atypical is really just an assumption on your

part that may or may not be accurate. Out of 2000+ plus members, only a

small number post regularly, so how would you know what the " group "

experience was in treating their rosacea? You are coming to conclusions and

posting them as " facts " when really they are just assumptions on your part.

(you could have said " the experience of this group is mainstream " and I

would still be making the same comment.)

On another related note, I think it's important to recognize that the points

of view you express seem to be limited to what " conventional medicine "

believes is possible, with " conventional medicine " being at the top of some

sort of hierarchy. While conventional medicine does a lot of good , it is

certainly not the be all, end all.

carrie

on 4/6/02 4:34 AM, emarjency at emarjency@... wrote:

>

>

>> I would take comments such as the one about this support group's

>> experience not being mainstream or typical (how would any one

>> member know the experience of over 2000 members?? Especially since

>> most of them do not even post!) with a huge grain of salt.

>

> , your grain of salt can be the size of a mountain , but

> that doesn't change the facts: there are an estimated 13 million

> people with rosacea in the US alone, and many (16?) millions more in

> Canada and Northern Europe, most of whom respond to conventional

> medical treatment.

>

> That's not to slight the millions who are not successfully managed,

> including many if not most of the 2000+ members of this group. Quite

> the contrary. To me, the question is why don't these people respond

> to medical treatment like the majority of rosaceans -- what makes

> them not mainstream, what makes them atypical.