April, '00 | Briefing | Mail | Don't Say This | Articles | Other Places | Archives | Send Mail | Ed Dewke | Legal Stuff
How I Learned I Had P
from Carol S.

Dear Ed: I was very surprised to find my letter on your website [Narrowband UVB in British Columbia]. So now, in answer to your question, I will tell you what I know about narrowband UVB.

The only technical thing I know is that it uses a more specific band of the B spectrum. It is intended to get better results at lower doses. So, that being said, here's the really important stuff.

After doing some test runs to determine at what point I would become a lobster, we started the new treatment regimen: Narrow UVB increasing at 10% per treatment for the first 14 treatments, then at descending increments (9%, 8%, etc.), and 3 hours coal tar, 3 times per week. Already I'm smiling. No more anthralin ... Tuesdays and Thursdays off! I might get better and have time outside the clinic too! Wow!

The first few treatments didn't really appear to be changing anything, no improvement but not backsliding either. This was a good sign, though, as I would typically backslide on weekends while using the regular UVB. After about 2 weeks I began to see significant improvement on my feet. I was almost afraid to saying anything lest I jinx it. After 4 weeks of NB I started to really believe what was happening. I have two of the prettiest feet in Victoria! Okay, so they aren't quite perfect yet ... but I would have to say 95% clear. The hands have been a little slower (hands always are, I'm told) but still I'm impressed, the right hand is 95% clear and the left about 50% clear.

So I'm thinkin', This is March and the first day of spring was Monday. D'ya think they'll let me go to summer remission camp this year?

PSORIASIS THE FIRST TEN YEARS

In 1975, I while living in Calgary, AB. I developed very small blisters on my fingers and was rather concerned as they were itchy, red and prone to cracking. I probably could have started a crime wave as I completely lost any recognizable fingerprints.

First doc (GP): "I don't know, try this cream." 

(Next visit:) "Hmm. Let's try this ointment."

(Next visit:) "Hmm-mm. Definitely inflamed. Let's try prednisone." 

(Next visit:) "Hey! That looks better."

Several months later, back at same doc: "Oh, gosh! It looked so good before! Now it's on your palms and the soles of your feet. You never had it there before did you? Try this cream and go see a skin specialist."

First visit to dermatologist: "Let's take a skin sample see what we find.... Here, try this cream." 

(Next visit:) "Well. It’s not a fungus, so I think we'll try this ointment." 

(Next visit, at which point I’m pregnant:) "I see you are improving. You're pregnant and it's getting better. Seems you’ve gone and cured it yourself!"

Of course it came back after the child was born. We were living in a small rural community in southern Alberta by then and somehow I couldn't justify an hour long trip with an infant to hear, "Well, let's try this cream."

So I sloughed along in ignorant bliss and had another baby which again relieved the itch. We moved again to an even more obscure address and you know what came back. A different doctor, same line: "Well, we could try this cream."

By this point the only thing noted on my chart is "eczema-like rash" and I'm getting more relief from a jar of Vaseline than anything the doc's have suggested.

We decided to move again, this time to central Alberta. There is a big difference between southern and central Alberta. Central AB has humidity. It’s dry by coastal standards but compared to the southern areas it's wet. That is the only thing I can think could have made such a difference. What followed was a THREE YEAR REMISSION. Talk about paradise; I was convinced we'd found it.

Remember that saying about all good things? Well, the P decided I'd had a long enough rest and for no apparent reason, other than it’s it and I’m me, it came back and has stayed.

This time I had no choice but to see if somewhere out there someone knew what this "eczema-like rash" really was. You can imagine my shock when the new derm took a 10 second look and pronounced Palmar Pustular Psoriasis, he had a total fit that I had not been diagnosed earlier, especially before "some jackass prescribed prednisone." He then gave me a nice lecture on hand and foot care, reached for his prescription pad and said "Now then. Let's try this cream."

Thanks again for the site Ed. I do limit my reading here as I like to enjoy your humor for the whole month instead of pigging out and then waiting forever for the next feast Stay well - Carol

*****

Ed’s Response: Your email made my day, Carol. You had me belly-rolling over experiences that are so awfully common and so damned sad. And it’s so true! You finally find a doc that diagnoses P correctly and what happens? Sometimes not much. Now then. Let’s try this cream. <I pause to giggle some more.>

I think I was in the perfect mood to read your story. This past week I passed my 8 month anniversary on Methotrexate and I’m back to being a mess again. The only thing left to remind me that I was nearly completely clear for a few months is my fingernails. They are still flat and only now beginning to show pits at the cuticle. In a week or so I’ll be begging my derm to increase my MTX from the modest 20 mgs per week I’ve been taking since the beginning, to some larger amount.

And thanks for sharing what you know about narrowband UVB. I’m going to talk to my derm about it. Light therapy has never worked for me because I burn too easily (just call me Mr. Sensitive.... No. Don’t). It seems this narrowband stuff is supposed to shoot less of the bad rays at a person. Just maybe I could stand more than a couple dozen seconds under the narrowband lamps.

Stay in touch, Carol! -Ed

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