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Misdiagnosed for 2 Years
from Arlene

Hi Ed.  I am a flaky person. Being a flake has taken on a new meaning. I have been suffering with P for about 5 years now and it's the PITS (Psoriasis Is The S-word) for sure. I have always felt so fortunate not to have suffered from acne due to over-oily skin, but now I'm suffering from what must be the opposite, psoriasis from overly-dry skin.  Geeeez at least they have a cure for the oily OR BETTER CONTROL.

Like Todd F. (Misdiagnosed with Cancer![1298i.htm]) I, too, was diagnosed having Mycosis Fungoids, which I knew nothing about. Now I’ve learned from your letters it is a form of cancer. Had I known that when I was diagnosed I probably would have taken a head spin, so I’m sorta glad I didn't know.

My old derm treated me for Mycosis Fungoids for two years.  When I saw my new derm he was in shock. He assured me it was not cancer, but the dreaded P word, which is better than the ultra-dreaded C word. Can you believe my new derm knew my old derm and they attended the same school? How could one be so wrong and the other so right? At least, I hope the new one is so right...

I have to make a comment on your wife's idea for a BBQ for Flakers, from your response to Judith B.’s Sea Breeze for Scalp P.  If all us flakers did show up in one place at the same time, we would have enough white stuff to start a ski resort, which could help to pay for some of the meds we use. 

I won't stay with relatives when I visit because of my flaking.  I stay at nearby motels so THEY can clean it up.

I used Sea Breeze [like Judith B., link above] and nada.... I used Psoriasin and it smells to high heaven and works for a while and then stops.

Most solutions use ethyl-alcohol as part of the base, which is drying to the skin and I can't understand why they use it. It burns like the H word even if you haven't scratched.  Other compounds use petroleum jelly as part of the base. Am I a machine or a person?  Now if we have a gas shortage we flakers can just trim off our skin to start our cars.

I am about to embark on the UV light treatment and I'm not happy about it but I hope it works. After reading some of your comments about it I have my doubts. And what will that do to the brain? I don't relish frying my brain or going for the light therapy 2 days a week. I think a lot of this has to do with nerves because I know when I get upset it gets worse and taking precious time to do this isn't helping the nervous system at all but it is now coming down onto my face and I don't want that. It’s also starting on my elbows. I'll let you know how things go.

Which brings me to another subject. Is it bad to scratch? Or does that help the stuff come off when it is hanging there from being saturated with all this junk? Putting hair spray on to prevent scratching just makes your hair more dry and irritable. I do take medication for the itching (Hydroxyzine generic for Atarax) which makes me sleepy. So now I've turned into a snowy sleepy head. WOW!

One thing that has helped me is Dermarest Medicated Scalp Treatment ($8.00 to $12.00 over the counter) (just like Dermasmoothie [$5.00 insured] per prescription) you put it on and wear a shower cap at night. I don't like the smell and so I don't have to smell it all night long I put it on for four hours during the day — which is a not to swift a thing if you are trying to make a living — then shampoo my hair with Dermarest Medicated Shampoo (another $8.00 to $12.00) ... SNOW TIME ... The stuff flakes off into huge piles. Is that good? It also comes back in huge piles. That is NOT good!!!! But at intermission time I don't have to use it everyday.

In between the times I can use the Dermarest (when I'm not traveling) and can't I use Neutrogena T/Gel Overnight Dandruff Treatment. This you do not have to shower cap and it has a pleasant smell but I do put it on before going to bed and let it settle into my hair/head and dry and do sleep on a towel.  I have to admit that their claims of "Relieves Itching, flaking and scalp irritation" and "won't leave your hair feeling greasy or oily" is a figment of their imagination. It does leave the hair bubbly until the bubbles die down and then it leaves it greasy until shampooed out. As for the itching, flaking and scalp irritation:  LOL.  It does make it the itching and irritation slightly less and that's why I keep using it.

At one point I was in tears because I thought that I might — since my towel on the floor just contained a few flakes — just might be able to wear dark colors again without looking like a snow bank.  In other words, I thought it was going away.  LOL.

So to the pill (not sure what the doctor is going to prescribe and another thing I didn't want to take since I have to have blood tests for liver infection) and the UV lights....

I am learning from your letters so keep on truckin’ to keep us flakers unflaked [at least, inside our heads].  –Arlene


Ed’s Response:  Scalp P tends to be very stubborn and, a lot of derms appear to agree, one of the reasons is it itches so bad and it’s extremely tough for us not to scratch or pick at it. 

Knock on wood, my own scalp P has been pretty quiet for over two years, since I started my systemic regimens — methotrexate, cyclosporine and methotrexate again.  Before that, scalp P was my first psoriasis symptom and raged unabated for a decade.  It drove me crazy.  I, too, purged my wardrobe of anything black or navy blue.

I remember, during those awful years, my derm using these exact words:  “Scratching your scalp turns your psoriasis into an atom bomb.”  He went on to describe one patient of his who admitted brushing his hair with a wire currycomb until it bled, at which point it would stop itching for a little while!

Emails in the archives here contain many stories and references to ways people remove the piles of flakes that tend to build up and get entangled in hair.  The safest way I’ve heard of to remove scalp scale without causing further damage (i.e., avoiding the atom bomb phenomenon) is to gently brush one’s hair with a thistle brush after the flakes are limp from soaking.  For me, a comb was always necessary, too.  Using a shampoo with salicylic acid, and after a night of wearing medicine under a shower cap, also helps this “de-flaking” process.   

Talking about using medicine overnight.  I was unfamiliar with Neutrogena T/Gel Overnight Dandruff Treatment and was disappointed when I could not find an ingredients list on the web.  “T/Gel” is the name Neutrogena has applied to other products that contain a coal tar derivative, so I expected the same or a similar active ingredient in this product.  (“T/Sal” is the name they use for products containing salicylic acid.  Coal tar works to inhibit the growth of scale whereas salicylic acid helps to loosen scale.)  The photo of the product, which comes in a pump spray bottle, makes it appear to be a clear fluid, which isn’t typical, in my experience, for coal-tar based products.  But appearance might be irrelevant. So who knows?  Neutrogena hasn’t made the active ingredient easy to ascertain.

While it does seem a bit outrageous that you were treated for two years by a derm who believed your P was Mycosis Fungoids, I know misdiagnoses aren’t uncommon.  Some derms know more about psoriasis than others and the irony is that a patient doesn’t know to seek out these more knowledgeable derms if the patient doesn’t know s/he’s psoriatic!

The good news is that now you know.  Join the National Psoriasis Foundation, if you haven’t already, and make it a point to stay current on new drugs and treatments.  Flaking is one of those diseases that is ultimately the victim’s responsibility.  So far, there is nothing within the medical bag-of-tricks that can take this curse away from us, so everything else is palliative and it is up to us to say “let’s try something else.”

It seems to me, Arlene, that you have several treatment options yet to try.  Your “pill” — the systemics — is only one of them.  Light therapy may work well for you, perhaps in combination with some other therapy.  And don’t forget to ask your derm about the new biologics — Enbrel, Amevive.... And for some immediate “new things to try” for your scalp P, ask your derm about Olux Foam, fluocinonide solution, or a compounded scalp medicine to use overnight under a shower cap, like the one prescribed by Dr. Krueger.

Meanwhile, keep your spirits up.  You will find ways to improve your condition!  -Ed

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