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Hit with 95% Coverage in 12 Months at Age 56
from Karppy

[Feb. 4, ‘02] I have friends, family and co-workers.  I have erythrodermic psoriasis.  In the beginning they all watched to see what was going to happen next with my  body.  It has been one year, the pain and itch has increased and the chills chills chills. Unbearable chills. The dermatologist has started me on cyclosporine.  I want it to work.

Well, anyway, back to friends, etc. People have been offering suggestions and advice.  Some good, some not so good.  I see my brother often but the psoriasis has progressed so quickly that I did not visit so readily.  Yesterday, I went to my brother's house for my niece's birthday.  I showed my sister-in-law and brother parts of my body.  My brother was so shocked and hurt. I could see it on his face.

My brother is usually a grin-and-bear it kind of guy, but five minutes after he saw my condition,  he went to a store and bought me an electric blanket.  There are no words to describe or express how I felt when he put it around me.  The love and support I felt from him was something so wonderful.  A condition like this really shows you who cares.  I just wanted to say I needed the support and I got it from a source I would not expect. 

Thank you for your site where I could relate the warm and comforting feeling I got from my brother. -Karrpy

*****

[Feb 8, ‘02] I discovered my first red spot one year ago and now this horrible disease has been creeping up on me every since.  I am covered head to toe, including genital areas, suffer from cold and chills and last night I finally admitted I do have arthritis.  I will see my dermatologist in ten days.  I did not mention the pain and  lack of flexibility in my hands because I did not want to have arthritis but it is definitely here.  Recently it took me forever to open an applesauce jar. 

Some people, with good intentions, tell me this or that or see some other dermatologist.  I’m seeing my second dermatologist now.  I have faith in him and I am comfortable with him.  He has recently placed me on cyclosporine and hopefully soon it will give me some relief. 

This site has become so important to me.  To know that I am not alone is reassuring and comforting.  I am a grown up person (57) but I feel like a little child.  I am scared and frightened. 

Thank you people for being there and writing your stories.

By the way, I know I am not suppose to scratch but it feels so good.  Tell me:  Why shouldn't I scratch?  Dumb question, but everyone says not to scratch.  Why? -Karrpy

*****

[Feb 10, ‘02] I have been suffering with feeling cold and having chills very often.  My brother bought me a heating blanket.  I’ve had it one week now but I am wondering if it is such a good thing.  I believe it is making me itch more or is it because it is night-time and I am more aware of my body?  I have been playing with the settings, lowering it when I get warm, or just taking it off.  Any thoughts? -Karrpy

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[Feb 16, ‘02] I was informed one year ago I had psoriasis.  Small spots on my neck and now I am completely red head to toe, scales 95% of my body.  My eyelids hurt when I laugh, itchiness all the time, and pain, pain and more pain.  I am getting a little nuts.  I am under the care of a dermatologist and am presently taking cyclosporine (three weeks).  I am comfortable with my dermatologist, know it takes time for the cyclosporine to kick in, is the wintertime (live in Brooklyn), and trying desperately to have some humor in this situation but today was very difficult. The sores have gotten very bad on my feet and now I have to stop working out at the gym.  I needed that outlet.  I have stopped wearing make-up and jewelry.  It hurts my skin too much.

My hair is definitely thinning and I look haggard and drawn.  My body feels and looks like a war-zone.  Thank goodness for your site.  The sufferers of this creepy disease know what I am going through.  It never ends. I wake up with pain and go to sleep with pain. I know this is not a happy note or an educational one, but I did not know where to turn for comfort. 

My family, friends and co-workers  have been helping as best they can but I cannot be a one song woman all the time.  I am trying to keep my regular life going but it looks like I need a quiet time out.  I will see my dermatologist in five days and will ask him exactly what type(s) of psoriasis  I have.  I am not going to wind up with a picture of my body in a medical journal.  It has to get better.  I just need an "amen" to that.  Thanks for listening to my woes and again thanks for being there.  -Karrpy

*****

[ Feb 25, ‘02] I just bought two cans of Bag Balm. I heard the name somewhere out on the net, but now I am thinking... Is it good or is it not all its cracked up to be?  Still looking for some relief.  Thanks for your site and advice.  -Karrpy

*****

[Mar 1, ‘02] I have the redness, itchiness, flakes, pain, hair thinning but I have not read anything about the stinging.  I feel, at times, that wasps or bees are stinging me.  I could be watching TV but Pow! I get what feels like a sting bite. One at a time or a whole series of them.  Do you know what these are? -Karrpy

*****

Ed’s Response:  Your case is one of those that makes me want to throw away most of the How and Why theories I hear about P.  What happened to bring it on so violently at age 56?  If, indeed, P is a genetic proclivity, what triggered it in you?  You’re already losing enough sleep — don’t lose anymore trying to answer that question.  The answer, for now, is probably unobtainable. 

But in the meantime, I’m glad you found FlakeHQ and I hope other readers will respond to you as well.  Let me address some of your specific questions.

Why shouldn’t I scratch?  Here’s what I’ve been told and find convincing.  Scratching can damage the skin that’s already behaving as if it’s damaged.  That initiates more of the same kind of skin response that created the lesion in the first place.  The skin behavior that causes P lesions is essentially a healing process run amok.  It’s as though something has tricked your skin into believing it has been damaged at the lesion site, and now it is accelerating skin growth and increasing blood flow — the causes of scales and redness — where there really is no reason to do so.  By scratching the lesion you probably will cause damage, and this just re-energizes the skin’s response. 

We’ve all scratched lesions to abate an itch or just remove excess flakes.  On a microscopic level, we undoubtedly pry away some skin that isn’t completely dead or detached.  This is what we’ve done when our scratching causes lesions to bleed — but I’m told damage can be done even if there is no bleeding.

We all do our best to control and contain our scratching. Your derm may prescribe topical or systemic medicines aimed directly at this problem.  Fight the good fight, but don’t berate yourself too badly when you catch yourself scratching.  If you were able to live with erythrodermic P and never scratch, I think you would be super-human.

Is a heating blanket good for me?  If you haven’t already, ask your doctor.  Erythrodermic P comes with its own set of dos and donts.  I have had electric blankets and used them when I was chilled, but not because of erythrodermic P.  I know that electric blankets can dry out your skin, and that may be dangerous for you.  One of the most important functions of our skin is to keep us properly hydrated — in other words moist enough, containing enough water.  One of the things P lesions allow to happen is moisture loss.  All that built-up dead scale is like an evaporative filter system.  Whether or not erythrodermic P threatens dehydration is something you should talk over with your doctor as well as whether or not an electric blanket is likely to exacerbate the problem.

Is Bag Balm any good?  Lots of flakers have used Bag Balm for many years.  For those readers who may not know, this product was and is intended for use on dry and cracking cows’ udders.  It was discovered to be a super-potent moisturizer for people, too, and most pharmacies carry it.  I’ve never heard from anyone claiming Bag Balm cured their P, but if it behaves as a powerful emollient, and is, perhaps, somewhat self-occluding (i.e., keeps air away from the lesion by smothering it in something greasy), it’s easy to understand how it might help calm down flaming lesions.  Search on “Bag Balm” here at FlakeHQ’s home page for more references in the archives, including Ira-Jane’s poem that, among other things, immortalizes Bag Balm as part of the flaker’s arsenal.

What causes the sudden sharp stings?  I’m not sure.  This isn’t a symptom I experience except very infrequently and associated with clothing.  Every now and then I will wear something that grabs flakes atop a lesion and rips them off when I move, and that will sting — especially if the flakes involved weren’t ready to be freed!  Perhaps other readers have shared this symptom and can lend their thoughts.

Like you, Karrpy, my P came later in life — though not as late and not as severely as yours.  I have high hopes that you will find a regimen to calm down your skin.  Cyclosporine completely cleared me for many months.  Skin lesions and P-arthritis.  It took me several months to find the right dosage and then, a year later when my blood pressure began to go up, I was returned to a methotrexate regimen.  Hopefully, sometime in 2002 I’ll be able to try an Enbrel regimen. 

Chin up, Karrpy, and stay in touch.  There’s lots of shoulders here at FlakeHQ, and I trust you’ve joined the National Psoriasis Foundation, use their web site, and have tried out the “Other Places” listed here. -Ed

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