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©2001 Ed
Dewke
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Misdiagnosed
for 2 Years Hi Ed. I
am a flaky person. Being a flake has taken on a new meaning. I have been
suffering with P for about 5 years now and it's the PITS (Psoriasis
Is The
S-word) for sure. I have always
felt so fortunate not to have suffered from acne due to over-oily skin,
but now I'm suffering from what must be the opposite, psoriasis from
overly-dry skin. Geeeez at
least they have a cure for the oily OR BETTER CONTROL. Like Todd F.
(Misdiagnosed with Cancer![1298i.htm]) I, too, was diagnosed having
Mycosis Fungoids, which I knew nothing about. Now I’ve learned from your
letters it is a form of cancer. Had I known that when I was diagnosed I
probably would have taken a head spin, so I’m sorta glad I didn't know. My old derm
treated me for Mycosis Fungoids for two years.
When I saw my new derm he was in shock. He assured me it was not
cancer, but the dreaded P word, which is better than the ultra-dreaded
C word. Can you believe my new derm knew my old derm and they attended the
same school? How could one be so wrong and the other so right? At least, I
hope the new one is so right... I have to make
a comment on your wife's idea for a BBQ for Flakers, from your response to
Judith B.’s Sea Breeze for Scalp P.
If all us flakers did show up
in one place at the same time, we would have enough white stuff to start a
ski resort, which could help to pay for some of the meds we use.
I won't stay
with relatives when I visit because of my flaking.
I stay at nearby motels so THEY can clean it up. I used Sea
Breeze [like Judith B., link above]
and nada.... I used Psoriasin and it smells to high heaven and works for a
while and then stops. Most solutions
use ethyl-alcohol as part of the base, which is drying to the skin and I
can't understand why they use it. It burns like the H word even if you haven't
scratched. Other compounds use
petroleum jelly as part of the base. Am I a machine or a person? Now
if we have a gas shortage we flakers can just trim off our skin to start
our cars. I am about to
embark on the UV light treatment and I'm not happy about it but I hope it
works. After reading some of your comments about it I have my doubts. And
what will that do to the brain? I don't relish frying my brain or going
for the light therapy 2 days a week. I think a lot of this has to do with
nerves because I know when I get upset it gets worse and taking precious
time to do this isn't helping the nervous system at all but it is now
coming down onto my face and I don't want that. It’s also starting on my
elbows. I'll let you know how things go. Which brings me
to another subject. Is it bad to scratch? Or does that help the stuff come
off when it is hanging there from being saturated with all this junk?
Putting hair spray on to prevent scratching just makes your hair more dry
and irritable. I do take medication for the itching (Hydroxyzine generic
for Atarax) which makes me sleepy. So now I've turned into a snowy sleepy
head. WOW! One thing that
has helped me is Dermarest Medicated Scalp Treatment ($8.00 to $12.00 over
the counter) (just like Dermasmoothie [$5.00 insured] per prescription)
you put it on and wear a shower cap at night. I don't like In between the
times I can use the Dermarest (when I'm not traveling) and can't I use
Neutrogena T/Gel Overnight Dandruff Treatment. This you do not have to
shower cap and it has a pleasant smell but I do put it on before going to
bed and let it settle into my hair/head and dry and do sleep on a towel. I
have to admit that their claims of "Relieves Itching, flaking and
scalp irritation" and "won't leave your hair feeling greasy or
oily" is a At one point I
was in tears because I thought that I might — since my towel on the
floor just contained a few flakes — just might be able to wear dark
colors again without looking like a snow bank.
In other words, I thought it
was going away. LOL. So to the pill
(not sure what the doctor is going to prescribe and another I am learning
from your letters so keep on truckin’ to keep us flakers ***** Ed’s
Response: Scalp P tends to be
very stubborn and, a lot of derms appear to agree, one of the reasons is
it itches so bad and it’s extremely tough for us not to scratch or pick
at it. Knock on wood,
my own scalp P has been pretty quiet for over two years, since I started
my systemic regimens — methotrexate, cyclosporine and methotrexate
again. Before that, scalp P
was my first psoriasis symptom and raged unabated for a decade.
It drove me crazy. I,
too, purged my wardrobe of anything black or navy blue. I remember,
during those awful years, my derm using these exact words:
“Scratching your scalp turns your psoriasis into an atom bomb.”
He went on to describe one patient of his who admitted brushing his
hair with a wire currycomb until it bled, at which point it would stop
itching for a little while! Emails in the
archives here contain many stories and references to ways people remove
the piles of flakes that tend to build up and get entangled in hair.
The safest way I’ve heard of to remove scalp scale without
causing further damage (i.e., avoiding the atom bomb phenomenon) is to
gently brush one’s hair with a thistle brush after the flakes are limp
from soaking. For me, a comb
was always necessary, too. Using
a shampoo with salicylic acid, and after
a night of wearing medicine under a shower cap, also helps this
“de-flaking” process. Talking about
using medicine overnight. I
was unfamiliar with Neutrogena T/Gel
Overnight Dandruff Treatment and was disappointed when I could not
find an ingredients list on the web. “T/Gel”
is the name Neutrogena has applied to other products that contain a coal
tar derivative, so I expected the same or a similar active ingredient in
this product. (“T/Sal” is
the name they use for products containing salicylic acid.
Coal tar works to inhibit the growth of scale whereas salicylic
acid helps to loosen scale.) The
photo of the product, which comes in a pump spray bottle, makes it appear
to be a clear fluid, which isn’t typical, in my experience, for coal-tar
based products. But appearance
might be irrelevant. So who knows? Neutrogena
hasn’t made the active ingredient easy to ascertain. While it does
seem a bit outrageous that you were treated for two years by a derm who
believed your P was Mycosis Fungoids, I know misdiagnoses aren’t
uncommon. Some derms know more
about psoriasis than others and the irony is that a patient doesn’t know
to seek out these more knowledgeable derms if the patient doesn’t know
s/he’s psoriatic! The good news
is that now you know. Join the
National Psoriasis
Foundation, if you haven’t already, and make it a point to stay
current on new drugs and treatments. Flaking
is one of those diseases that is ultimately the victim’s responsibility.
So far, there is nothing within the medical bag-of-tricks that can
take this curse away from us, so everything else is palliative and it is
up to us to say “let’s try something else.” It seems to me,
Arlene, that you have several treatment options yet to try.
Your “pill” — the systemics — is only one of them.
Light therapy may work well for you, perhaps in combination with
some other therapy. And
don’t forget to ask your derm about the new biologics — Enbrel,
Amevive.... And for some immediate “new things to try” for your scalp
P, ask your derm about Olux Foam, fluocinonide solution, or a compounded
scalp medicine to use overnight under a shower cap, like the one
prescribed by Dr. Krueger. Meanwhile, keep your spirits up. You will find ways to improve your condition! -Ed www.flakehq.com |