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Debilitating Hand P Threatens Livelihood
from Mark P.

Hi Ed: Found your site today as I searched for answers/info on P. I was diagnosed earlier this year with P. My problems are P on both hands and sometimes in the crotch (difficult to explain to a date).

I almost feel embarrassed to read how bad your case is when compared to mine. My P isn't as widespread as yours, but my hands are real bad. The flare ups are coming more regularly, and sometimes my hands become absolutely, totally useless—they just hang there. The swelling, cracking, bleeding, scaling make them impossible for me to use. I have lost my job and looking for a new one is embarrassing and almost impossible: "Here, Mr. Interviewer, shake my bleeding, flaking hand and watch me wince." I can't prove it, but I'm sure I lost some possible jobs because of this condition. Now I may have to go on disability, which is really depressing to me.

Today I'm fine. But I can have a flare up at any moment. And like I said, when I do my hands are useless. I might as well not have any hands or have them cut off. Bathing, brushing my teeth, shaving, putting on my clothes all become nearly impossible. This really sucks.

My pharmacy (this is what I call my kitchen counter top now) includes Triamcinolone cream, Dovonex cream, Ecolon cream, Keflex antibiotics, LCD lotion in Nivea oil (coal tar I guess), clobetasol cream, prednisone and Cetaphil lotion. My therapies are varied and change weekly, which is how often I see my dermatologist.

My condition is so bad that my case is going to be presented to a group of physicians at Rush Presbyterian - St. Luke's Medical Center in Chicago. My dermatologist (who is wonderful) says I have an extremely bad case mainly because of the number and severity of my flare-ups. Her concern is with the ongoing damage to my lymphatic system. And she even mentioned the possibility—only a possibility—that down the road we may have to look at chemotherapy as another option.

I'm sorry to seem to be babbling but I just needed to know there are others out there like me and I wanted to share my story. I have gone from an active lifestyle (working out daily, golfing, etc.) to an inactive, sedentary lifestyle. Manual work is out of the question, and like I said, finding work is getting impossible for me. Although I am highly educated (MBA) and certified (MCSE) having this problem presents more challenges than I thought. It depresses me to think I am not useful to someone.

Your site has been a welcome comic relief for me as I'm sure it is for a lot of others with this damned condition. I plan to visit it more often. Keep up the great work, as I believe humor does help and is important in any therapy. -Mark P.

*****

Ed's Response: Whew, Mark! Your P might not add up to big numbers geographically (i.e., percent of skin affected) but it's probably hitting you harder than most flakers with five times the coverage. Hmmm. Hands and crotch. For a guy, that's about three-quarters of our sexual apparatus. No fun.

I am affected on hands and crotch as well, but—knock on wood—so far the days my hand P has been nearly disabling have been few and far between. At the moment—knock on wood again—my P in both places is better than it has been in over a year. I believe I can attribute this to the Methotrexate therapy, which I'm four months into, now. I wonder if MTX is one of those chemotherapies your derm has mentioned as a "down the road" option?

Before MTX, my best-bet therapy for hand P was overnight occlusion of a group 1 corticosteroid (usually Diprolene or Temovate) using food handler's gloves taped tight at the wrists. Four successive nights of this occlusion, at most, would quiet raging hand lesions, meaning cracks would also heal. Occlusion was so reliable I could actually schedule it (i.e., write notes to myself to lay in supplies and do it) weeks in advance of important business trips or speaking engagements. I think one reason it did work so well for me was because I did not overuse it. When I wasn't making professional appearances, and the cracks weren't debilitatingly painful, I usually tackled the hands with topicals and no occlusion, which is to say I let the lesions run their course with only moderate intervention.

You did not mention psoriatic arthritis as a part of your hand problem, so I am assuming it isn't ... which is good, because PA is something the occlusion therapy never improved for me. Fortunately, PA in my fingers has been a johnny-come-lately problem for me and the MTX has worked well on it, too. Your case makes me realize how much I have to be thankful for.

For some inspiring sympathy, check out In Strindberg's Shadow from the Archives. Johan August S. was a famous flaker whose hand P was also debilitating. If the portrayal of him by Max von Sydow in the movie "Wolf at the Door" is factual, Strindberg was hospitalized to obtain the same kind of occlusion we accomplish at home these days.

An MBA and an MCSE certification (Microsoft Certified Systems Engineer) is a potent and potentially lucrative combo in our day and age, Mr. P., and I don't blame you one bit for being dismayed about a physical condition that can keep you from realizing that potential. I don't know—because I don't possess either of those credentials—but aren't you a likely candidate for a good telecommuting livelihood? Perhaps I overestimate the availability of this kind of work. It has, after all, taken me three decades to "grow" my current situation (see Aren't You In Hiding, Ed? in this month's mail).

Let us know how the job hunt goes, Mark ... and if your derm was thinking MTX when she mentioned chemotherapy. If she was, check out the Archives here for several exchanges about Methotrexate and a journal from my 1st twelve weeks on this therapy. I'll be thinking about you! -Ed

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