May-June '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

Did Major Life Change Trigger It?
from Tony C.

Hi Ed, my name is Tony, sorry I am not an English speaker but I’ll do my best.

Ahh, where do I start?  I think it has all been said.  First of all thank you for the facility, God bless you, I really like your site.  It feels like the real world, unlike advertising.

I have had psoriasis for the last eight years.  I am 25 today and I suffer from palmo-plantar [pustular] P which is hands and feet.  Don't have to explain, been through the whole lot.  I am a musician.  I play violin and piano or I can only play them sometimes, I have an extreme case, there was times I could not walk or use my hands at all, I have lost my hobbies, friends, freedom, happiness, hope, house, and recently my marriage.  It’s endless, heartbreaking, and depressing.  Anyway, don't want to depress your readers,  in spite of it all I am the biggest SMILER, a very strong person and I refuse to live with PSORIASIS, I will not give up, I just want my good old hands and feet back.  Its true that we take things for granted, one of the most important things in life and relationships is to be able to touch, feel, hold hands.  I’m forgetting  what that feels like.

Anyhow, I could go on for pages, but I will just get to the point so it’s not boring for readers.

I developed P six months after I moved to Australia and I come from the Middle East — Lebanon — where nature is very rich, water, air, environment. 

Could this be the REASON for my P?

Could it be the big change? country, marriage, environment?

Could going back to where I come from make a difference?

Could P be reversible if that's the reason?  I mean could psoriasis just clear by itself and go to HELL!? (hhh Hope that made you smile.)

Could moving and living by the Dead Sea in Israel be a cure or an on going relief? I mean surely a side effect would be a terrorist bomber. Sorry — can’t help but add a sense of humor. 

Sorry for too many questions but I guess everyone would benefit from answers.

For now I am starting on Raptiva in two days.  If it works I don't care about side effects, if I can only have my hands and feet back the way they were for a few years then get a cancer as a side effect and die it would still be worth it.  It really isn't worth going on like this.

Thanks Ed, you are a treasure for us, God WILL repay you for doing this as you are helping many people.  Keep up the good work and inform us about your case as we all care. God bless you all.  -Tony C.

*****

Ed’s Response:  Psoriasis is particularly painful to the artistic soul.  I believe this.  If you haven’t already, Tony, please search on “musician” at this site’s home page and you will get a short list of correspondence, some of which is quite similar to yours.  I think you will find those other stories helpful.

Certainly the trauma of a major life CHANGE — like you underwent moving from the Middle East to Australia, then getting married, etc. — can be the trigger, or at least “a” trigger, for P.  My first P symptoms cropped up in 1989.  Nearly a year earlier I had quit my job as an executive at a non-profit organization in Washington, D.C., moved to the high desert of western Colorado, built a house, started my own business, and learned over a few months time that I had made a terrible decision.  That cost me my marriage, my home, other aspects of my health, and I began to flake.  It is not hard for me to believe YOUR major life change either created or contributed to the creation of your P.

Going back?  Boy the thought sure occurred to me more than a few times.  While my life was sinking in western Colorado, I felt sure I could pick up where I left off in Washington, D.C., if I could only muster the courage to return.  But during the nearly two years of slowly dying (emotionally, at least) out west, I drained my bank accounts to maintain some resemblance of my former standard of living and it eventually became obvious — even to me — that I could not afford to move back to one of this country’s most expensive metropolitan areas.  It was obvious, though, that I had to do something.  And, to make this long story no longer, I ended up in Kentucky — halfway back to D.C. from Colorado. 

So, is it possible your P would go away if you went “home?”  I’ve read about cases where P has gone into permanent remission, sometimes for no apparent reason.  But I think these cases are rare.  Since P is likely to be triggered only for people who already have the genetic predisposition to flake, turning it off once it has started must be a purposeful act.  It doesn’t seem to be a disease we can simply run away from

Your home, however, is, relatively speaking, close to the Dead Sea.  Most likely extended therapy there would help you, but probably not cure you.

I believe you are doing a smart thing by trying Raptiva.  I’m trying it right now, too.  I’m in my fourth month on Raptiva and seeing good — but slow — results.  My optimism remains steady.  Don’t be in a hurry with this biologic.  Genentech (the manufacturer) suggests that if you haven’t seen improvement in 12 weeks (at full dosage) you should discuss next steps with your derm.  I would suggest that even if the improvement you’ve experienced at 12 weeks is less than satisfactory, you should consider continuing the treatment.  As you’ve not had P as long as me, hopefully you will be a quick responder.  Palmo-plantar P is different than plaque P but often responsive to the same treatments....  Again, please be patient.

And let us know how Raptiva works for you.  -Ed

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