Sep-Oct '08 | briefing | mail | interviews | articlespsorchat |  don't say this | flaker creativity | flakers' jargon | other places | archives | send mail | ed dewkesearch | acknowledgments | legal stuff | Flake: Confessions of a Psoriatic  | 2008 Ed Dewke

Good Run on Remicade Might Be Over
from Dorcas B.

Hi. Love your site! I can't believe I've never seen it until today. Since I love to laugh I have only read the page of stupid remarks made by non-flakers.  But I can tell I'm going to be on here a while reading as much as I can tonight and more tomorrow.

First a bit of my history — I've had P for about 41 years (I'll be 45 soon) and PA for 8 or so. I haven't had severe skin involvement since my first child about 20 years ago.  A few years ago the drug Humira (given to me for my PA) made me break out in a rash of little “psoriasis dots,” but the start of Remicade made it ALL go away. Remicade is the only thing that has EVER made my old spots, the original plaque lesions I’ve had since childhood, go away.  But is there any such thing as staying clear skin-wise?  I think not. 

Two weeks ago a woman I've known and tried to get away from for years was absolutely driving me over the edge. I had finally had enough. I was very stressed — maybe more stressed than in a long time. I broke out in a heat rash. Two days later the heat rash turned into psoriasis. And all future little rash dots turn into it too. So, I've gone from NO skin involvement to about 70% covered in about three weeks!  I got my Remicade two weeks early and it did hardly anything. I have a dermatologist appointment on Thursday. Now I'm staying in and trying not to sweat and break out more. Did I mention I live in Dallas, Texas? Hard not to sweat here.

Hope you have a lovely vacation and I love your site.  Keep up the good and funny work.  It really does help me to laugh and make jokes so I'm glad to find others who feel the same way.  I even time my pity parties! Honest!

Dorcas B., with PA and P in Dallas Texas

*****

Ed’s Response: Thanks for finding us and writing to us, Dorcas. Your story is a testimonial to one of the more painful lessons we’ve learned about “the miracle of biologics.” I remember listening to a derm at a podium in late 2004 talking about the “chronic” nature of psoriasis, comparing it to diabetes, building up to his assertion that biologics were for a lifetime. We didn’t know, at that time, how common it would become for flakers to “wear out” their biologics, like we “wear out” every other medicine we take for psoriasis. And, as with all those other medicines, no two users appear to have exactly the same time tables for wearing out their biologics. You’ve been using Remicade successfully for “a few years.” Humira didn’t work for you, but it does work for me right now. But I’m painfully aware I could wake up tomorrow to new, Humira-impervious lesions. To be a flaker means to live with a condition that’s still largely a mystery. The only thing that must endure if we are to carry on our struggle to achieve “skin normalcy” is our vigilant, on-going pursuit of relief. I make that sound like a tougher job than it really is. The basic requirement is simply to stay informed.

Welcome aboard, Dorcas. We look forward to hearing from you again. -Ed

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