Re: Are we expecting too much??

April 5, 2002

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

April 6, 2002

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..

April 6, 2002

> 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

April 6, 2002

Hi all

When I made reference to studies, I was not referring only to those

conducted by the National cea Society ( where I have been a member for

12-13 years ). Dr. Wilkin, and Dr Dah are two names which quickly come to

mind. I am talking about well designed scientific studies, not ancedotal

ones ) but those with controls. it is unfortunate that The National rosacea

Society has come to be viewed with suspicion due to their assocation with

Galderma which does have a lot to gain from promoting its own products.

Hope that we as a group can contine this dialogue in the same spirit in

which it was started . Not to be a put down on all of us who have had the

unfortunate luck and genetics to have this irritating ( no pun intended )

skin thing, but as a way of initiating a forum to prompt us to take a hard

look at what we are expecting from the meds, the topicals, the orals, the

cosmetics, and what we can realistically expect . i hope that I will not be

seen as a " problem poster " I enjoy visting here and talking with you all. I

hope that we can continue an open and frank discussion. I don't mind

criticism despite my thin skinned face, I am pretty thick skinned eveywhere

else.

Take care all

BTW. I am really giving the metrogel a chance this time. And not expecting a

miracle like I did before . I hope that when I feel like giivng up that I

will have the strength and conviction ( with your help and encouragement )

to continue.

Thanks for enduring my posts.

All the best as we struggle to come to terms with this. May be continue to

grow and share and learn.

> 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..

>

> --

> Please read the list highlights before posting to the whole group

(http://rosacea.ii.net/toc.html). Your post will be delayed if you don't

give a meaningful subject or trim your reply text. You must change the

subject when replying to a digest !

>

> See http://www.drnase.com for info on his recently published book.

>

> To leave the list send an email to

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>

April 6, 2002