Mar-Apr '05 | briefing | mail | don't say this | flakers' jargon | flaker creativity | articles | interviews | other places | archives | send mail | ed dewke | legal stuff | search | PsorChat | PsorChat Review | acknowledgments | 2004 Ed Dewke

Derm Insinuates a Cure
from Courtney J.

Hey 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.

My 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.

Now, 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?

I know that my psoriasis is not giving up easily, at best, and I am extremely skeptical about it going away forever.

One 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.

I 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).

Am 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.

I don't know really what my question is, I guess.

I read the list of diet restrictions. And all that I can think is, What would I eat? What the hell would I eat?

And, 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 anyway.

I 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).

Well, 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. -Courtney J.

*****

Ed’s 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!

Glad 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. 

But 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.

Your comment to him was, I guess I will be doing this forever, (meaning the phototherapy, perhaps the seasonal relapses plus the phototherapy). 

Your derm “took that like I was crazy, and seemed confident and certain that my psoriasis would clear and be gone for good.” 

What I hope he was reacting to was your assumption that you would be depending on phototherapy to treat your P forever. 

If 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 ill consequences.

Meanwhile, 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.)

If 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.

There 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.

Final 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

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