Tired of Trying 
from James

Hello Mr. Dewke:  I am a 26 year-old from the UK who has suffered from P for 9 years. I have just finished reading the message from Al L. (Coming Out as a Flaker) and I was amazed by the similar experiences we’ve both been through.

I first realized I had P while I was in Australia.  Within a matter of weeks it spread rapidly, especially on my face. I had a brief remission of around two months but it has been with me ever since: body (60%), scalp, every nail, genitals and skin trauma sites through the Koebner phenomenon — and arthritis. Thankfully, at this moment it’s not on my face.

Your web-site is a God-send and the many contributors have had me in fits of laughter and tears in equal measure.

The reason I find myself posting this message is that from what I can gather my experiences are not unique. We all seem to have been let down by various medications, relationship problems (what an understatement) and ever-decreasing self-esteem.

Recently my condition has worsened and my resolve to combat this affliction has waned immeasurably. I'm tired, you know. Really tired. Last month I lost my job due to mass company redundancies and the lesions began to re-appear on my neck and then my face.

It's strange.  You think that when you have suffered for so long you would become mentally stronger, but for me it is the opposite. It's a struggle just to go outside to the shops and summer is just around the corner.  Great.

Ironically, my GP has diagnosed that I also have vitiligo on my hands and arms. So the one thing that actually helps my P — sunlight — I now have to avoid. And who says that God doesn't have a sense of humor.

None of the treatments that have been prescribed to me — PUVA, topicals, everything — have ever been anything but a limited success. I hope the humility that you have shown and the courage of all your visitors can inspire me go another round with this condition because at the moment it dominates my life.

Keep up your tremendous work. -James

*****

Ed’s Response:  Of course you’re tired, James.  Another way of putting it is, you have worn yourself thin fighting this thing.  You have been deliberate in your attempts to combat P, yet it behaves as though it barely tolerates your opposition and needs very little motivation to simply undo all that you have done. 

People must live through something like you have to understand that spirit and will are consumables.  We hold so much of them, and they can be used up — but they can also be replenished.

You need a break.

One of the things I haven’t kept up with is the reception of our new batch of “biologic” drugs for P in the UK.  I know you have your own processes of drug approvals.  I’m wondering about it because I sure hope you’ll have access to drugs like Enbrel, Remicade, Amevive and Xanelim (undoubtedly to be offered, sooner or later, under different names across the pond).  Their upcoming availability for me is boosting my spirits (i.e., replenishing one of those consumables).  The Methotrexate is beginning to lose its effectiveness and I was taken off Cyclosporine last year because my time limit was running out and my blood pressure was rising.  Me and 20,000 others are on the Enbrel waiting list right now and, if its availability continues to slip into 2003 I’ll be crying in my Diet Coke and definitely looking elsewhere.

James, do your best to recall what’s propped you up before.  Where did the energy come from the last time you flamed?  You may find an altogether new repository while you’re looking for remnants of the old.  What does that mean?  You’ll know when it happens to you. 

Write again and let us know how you’re getting on. -Ed

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