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Insinuates a Cure
Dewke. How are you? I have been with psoriasis for about 10 years now.
Like many people, mine seems to gradually get worse as I go along. It is
like a never-ending battle. Anyway, I have been doing narrowband UVB
treatment for a few years now. In the summer, I quit for a few months due
to a tan I had gotten, and in order for the treatment to work, I would
have to quit and start back up again in a few months.
dermatologist assured me that my psoriasis would not get worse in this
time, but I knew that it would, and of course it did. Recently I commented
to him that I guessed I would be doing this forever, and he took that like
I was crazy, and seemed confident and certain that my psoriasis would
clear and be gone for good. Now, this seems completely crazy.
he is not just some dermatologist, and in fact, my derm before recommended
him, claiming he "practically wrote the book on phototherapy."
He's good, but doesn't this seem strange?
know that my psoriasis is not giving up easily, at best, and I am
extremely skeptical about it going away forever.
of my close friends got psoriasis about a year ago, the kind with blisters
on her hands and feet. She has mentioned possibly wanting to try the
biologics just to avoid the other health problems that come with psoriasis
(arthritis, mainly). Also, have you heard that 80% of people with nail
psoriasis develop arthritis? It is scary, though.
am only 27, so, I need to be in good enough condition to be working and
productive for many years. And I know I am kind of lax in my treatment.
Good enough is okay for me. I mean, I've had this for 10 years, you know?
I am not revolving my life around my psoriasis. And I hope that statement
does not come back to haunt me, because if I do develop PA, I could be
doing just that (letting my life revolve around the PA).
I too cynical? My dermatologist was so sure. And I am like, Are
you Crazy?! What is wrong with
you?! But his patients actually get cleared and stop getting treatment
and he moves on to new patients.
don't know really what my question is, I guess.
read the list of diet restrictions. And all that I can think is, What
would I eat? What the hell would I eat?
I am afraid of the biologics. I don't trust that shit. Of course, I have
nothing to go on except my gut, which hasn't been doing me too much good
sure would like to stop my body from attacking itself. Something about
that just seems so wrong. Like, I must be doing something really wrong if
my body is attacking itself. But I must say, the thought of eliminating
everything from my diet just does not sound too appealing (though I have
thought of fasting for a period of time to see if that helps. I have been
flirting with the idea for awhile, but have yet to be strong enough ...
anyway, if it ever happens I will let you know how it goes).
I hope you are well. By the way, I quit smoking about 8 months ago, for
other obvious reasons, but it has had no effect on my psoriasis. See you.
Response: First, glad to hear
from you after four years! I’m
nearly certain you re the Courtney J. who wrote She’s
Happier Not Fighting P and Happy
Non-Fighter Fights Back. If
you’re not, please accept my apologies!
to hear you respond well to the narrowband UVB, Courtney, and sorry to
hear that in order to enjoy some sun in the summer you have to lay-off the
treatments and, consequently, endure something of a rebound.
what I’m most sorry to hear is that your derm is shocked by this!
Everything I’ve read about phototherapy for P suggests symptoms
will return when the treatment is stopped.
(Fact is, no P treatment is permanent, which is why none is called
“the cure.”) But I’m
going to give your derm the benefit of the doubt and suggest another take
on his reaction to your comment.
comment to him was, I guess I will be doing this forever, (meaning the phototherapy,
perhaps the seasonal relapses plus the phototherapy).
derm “took that like I was crazy, and seemed confident and certain that
my psoriasis would clear and be gone for good.”
I hope he was reacting to was your assumption that you would be depending
on phototherapy to treat your P forever.
I was him, I would tell you that, at your age (27), you will probably not
be bothered by your P by the time you reach middle age — because you
will be treated with a regimen that suppresses the symptoms for as long as
you continue the treatment. Furthermore,
I’d tell you that you will probably be able to go sunbathing in the
summer without concern about rebound.
You will acquire your tan — on skin without lesions — with no
quitting smoking was a step in the right direction no matter its impact on
your flaking. When I quit
smoking and drinking I had high hopes this would improve (or eliminate) my
P, but I experienced no change, too. My
general health is no doubt better than it would be had I not quit those
vices ... and I can say without hesitation that I’m in a position to pay
for more medicine now than I could afford when I smoke and drank!
(I still visit smoke-filled bars with my old buddies — but these
days I go strictly as a consultant.)
I could, I would turn around your distrust of the biologics.
And I say that not because I’ve experienced such overwhelming
success with them! (Enbrel
didn’t touch my P; they wouldn’t let me start Amevive because my
lymphocytes had abandoned ship; it’s too soon on Raptiva for me to
expect anything positive....) Everyday
in my email, Courtney — every day — I receive messages from people who
are achieving success using the biologics.
For many of them, this is the first clearance — partial or whole
— they have experienced in years or decades.
If it were possible for tears of joy to be transmitted via email,
Courtney, I’m sure lots of these emails would be glistening wet.
could be many reasons for any flaker not to try the biologics at this
time. Certainly the high cost
of these drugs is a hurdle for anyone without insurance that will cover
them. But I encourage everyone
to consider them and to discuss them with their derm.
comment: I had to grin when I
read, “I must be doing something really wrong if my body is attacking
itself.” I think every
flaker feels that flicker of guilt at some point.
I call it the “Job Effect” (Job
as in the Bible). This feeling
— it’s more a feeling than a belief — is the fuel for the stigma and
shame we so often feel. Our
cognitive selves realize the feeling has no basis — we are NOT doing
something terribly wrong that causes our bodies to attack themselves.
Our immune systems are broken, not because of something we have
done, but because of our genetic proclivity — something over which we
have no control (for the time being).
I wish that knowing we’re not at fault would make the stigma and
the embarrassment go away, but it often doesn’t.
Interpersonal communications issues are involved and can be way
more complex than the flakes we show and shed.
Now, don’t wait another 4 years to write again. -Ed