Thank you for taking your time and effort to share all these with us!
We all should have posted a history of treatment like you. I lock
your e-mail in the draft. No questions ask (I am not going to return
it :-) at this moment. Still catching up.

You have a terrific 2005!

Adam


rosacea_patient <rosacea_patient@...> wrote:



I made this long post yesterday and I should have read this
wonderful message board a little closer before I did. My mistake.
It will not happen again. I have cancelled my check to the
http://www.rosacea.org/ after learning that they are just some
company trying to make money. I do hope Dr Nase is successful in
creating a Not For Profit organization for Rosacea Research. I will
be donating money if it happens.

I would appreciate any feedback on my post and any information on a
treatment that you may have tried and worked for you.

Does anyone know of any good DNA or Gene Therapy Research that has
gone on for Rosacea? I feel that is where the answer lies to the
cure for Rosacea.

I am a 38 year old male of Germany heritage. I have fair skin.

I was first diagnosed with Rosacea 1 Mar 1993 at age 26. My first
symptom was small patches of inflamed skin level with my nose and
underneath my eyes. Over the last 11 years my skin has gone through
many changes all for the worse. This disease has always gotten
worse for me. It has the ability to adapt and overcome treatment
with antibiotics.

I have had severe Rosacea for over 5 years and have been very
aggressive about seeking out treatment for my condition. I don't
want to go into a long history of how this has effected me mentally
other than I have been very depressed about my condition as I think
about my future quality of life. It has been so severe I could not
concentrate enough to do my job. It has made me agitated which in
turn affects my professional and personal life. Only people with
Rosacea can understand the mental effects that it will cause.

I have used the following medications:
1% Hydrocortisone ?don't use this medication, it will eventually
damage your skin
Biaxin (Antibiotic) ?not effective
Metronidazole ?not effective
Tetracycline (Antibiotic) ?not effective
Minocycline (Antibiotic) ?not effective
Azithromycin (Antibiotic) - very effective for 45 days
Isotretinoin ?Accutain is the brand name, Amnesteem and Claravis
are generic versions - very effective for controlling inflammation
Protopic Ointment 0.1% - effective against inflammation
Rosac Cream with Sunscreen Sodium Sulfacetamide 10% and Sulfur 5% -
very effective

Over the counter:
Aquaphor Healing Ointment ?Eucerin ?necessary if using Rosac
Total Block SPF 65, Zinc oxide ?Fallen www.totalblock.com ?good
sunblock with zinc

The antibiotics I feel have an anti inflammatory property that calms
the inflammation of the skin. I have taken large amounts of
Antibiotics since age 14 for acne. Unfortunately antibiotics become
ineffective after taking them for a while. Skip the antibiotics and
go straight to the Rosac cream. The cream is fairly new and works
very well. You must use the Aquaphor to moisturize due to the
drying effects of the Rosac. I experienced a decreased ability to
smell as a side effect of the Rosac cream. Try not using it on your
upper lip.

Isotretinoin. It works for the inflammation of the skin and ocular
inflammation. Ocular Rosacea is when the inside of the eye lids
become inflamed and it feels like your eye lids are lined with sand
paper.

I take Isotretinoin in low dosage, not in the traditional dosage for
acne. I weigh 165lbs or 75 Kg and the most effective dosage for me
is about 10-15 mg per day. I have been using it for over two
years. I have had to take a break from it twice and use Rosac cream
each time. Think long and hard after you talk with your
dermatologist about taking Isotretinoin. Read everything you can
about the side effects of Isotretinoin. I do not have any side
effects from Isotretinoin because I use it in such a low dosage.

Protopic ?effective ointment for decreasing outbreaks of
inflammation. Great substitute for Hydrocortisone. I have found it
to cause stinging of the face after a few months of heavy use. I
use it sparingly now. Do not drink alcohol and use this medication.
It will make your face very red and inflammed.

Rosac ?very effective cream. It stopped working for me after a
couple of months but I think it was due to all of the antibiotics I
have taken in my life. I have friends with Rosacea that have used
it long term with good results.

I have had the following procedures done:
Photoderm - ESC Medical System ?VL Machine ?very short term results
Endoscopic Transthoracic Sympathectomy (ETS): Sympathetic Nerve-
Mediated ?very effective for severe blushing

Photoderm ?I have had 10 treatments with an MD that was trained by
the Dr. who perfected "Photoderm." (There is also a "Fotofacial"
procedure done by a Dr. that is the son of the Dr. who perfected the
procedure. I understand the father lives in Los Gatos, Ca and has a
very good reputation for treating Rosacea.)
I had 5 treatments done and then about 15 months later I had 5 more
done because I was told that is was the best treatment for Rosacea.
The only results I saw from Intense Pulse Light (IPL) treatment were
after the first two sessions and they were short term. I have read
everything Dr Nase says about (IPL) and the shrinking of the blood
vessels beneath the surface of the skin. All I can say is that is
had very little effect on me. After looking back on the cost of
treatment and the results I would not do it again.

Here are my setting that were used:
Date nm J/cm2 S/L T1 D1 T2 D2
T3 # days between treatment
27 Jan 00 550 31.0 S 3.0 30.0 3.0
31
24 Feb 00 550 31.0 S 3.0 30.0 3.0
34 29
08 Jun 00 550 47.0 S 2.5 10.0 2.5 10.0
2.5 47 106
27 Jun 00 590 47.0 S 2.5 10.0 2.5 10.0
2.5 23 18
18 Jul 00 590 48.0 S 2.5 10.0 2.5 10.0
2.5 42 22

15 months
26 Feb 02 590 47.0 S 2.5 10.0 2.5 10.0
2.5 43 30
26 Mar 02 590 46.0 S 2.5 10.0 2.5 10.0
2.5 139
15 Aug 02 590 47.0 S 2.5 10.0 2.5 10.0
2.5 23

9 Nov 02 Full face treatment with many different wavelengths
and pulses

Endoscopic Transthoracic Sympathectomy (ETS): I had this procedure
done by a Dr. in San Antonio that knows exactly what he is doing. I
had severe flushing that was causing me to not be able to function
in everyday life. I sat in front of a fan at home, I ran the air
conditioner in the car on my face in winter and used a direct
blowing powerful vent on my face at work everyday, all day. The
flushing was madening. I did not see good results from ETS until 6
months after the surgery. A patient that had the procedure the same
day as myself also did not see good results until 6 months post
surgery.
I don't have any compensatory sweating. Side effects are very dry
hands and brittle finger nails. You will have to use lotion on your
hands to handle paper. I have no head sweating at all even during
strenuous workouts. Your face will become pale during workouts.
Lower pulse and blood pressure. This might be due to less anxiety
from flushing and will return to near normal after 6 to 9 months.
If you are a severe flusher I can highly recommend this procedure.
This procedure will not cure Rosacea but along with the use of Rosac
cream I have had very, very near normal skin for the first time in
my life.

My insurance company paid for this procedure after I wrote them a
long letter explaining the excellent results of the surgery and my
long battle with flushing. The cash price when I had it done in
early 2004 was $8,500.00. www.hyperhidrosis-usa.com

I have taken the following vitamins:
Ester ?C 500 mg
Grape Seed Extract 80 mg
Pycnogenol 50 mg
Wobenzyme N 3 tablet twice a day
Flaxseed oil 500 mg
Borage Seed oil 500 mg
Vitamin E Oil 20,000 IU ?Protests Skin Cells from Damage ?good
skin moisturizer

I have never seen any improvement from taking vitamins. I feel they
are just expensive placebos if you eat a balanced diet.

Shaving and soap…good luck. I have tried the expensive electric wet
shavers and I just can't get a close shave with them. I use cream
and a two bladed shaver and find it pretty irritating. It takes
about an hour for my skin to calm down after shaving. There are way
too many expensive soaps on the market. Most of them over rated. I
used a product by La Roch for extra sensitive skin that is only sold
in Canada for a while. I got tired of paying too much for it and
now just washing with water after shaving and put the Vitamin E oil
on right away.

You can keep up with clinical trials at these web sites:
http://www.clinicaltrials.gov/
http://www.centerwatch.com/

Take care and keep the faith









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