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For the Uninsured Inexpensive Regimens Matter
from Liza C.

Hi.  It's fall again, sun's gone, cold rainy New Hampshire days and my skin is crawling! I went to the web with a renewed determination to get this under control and began my search of P remedies. Anything new? Not really. But I did find you!

I've had P since I was sweet sixteen, it erupted after a period of stress in High School, so that's ... 26 years ago. My mother has it. Interesting about the trauma treatment, she had knee replacements about 10 years ago and after that the P on her knees and legs pretty much cleared up. She also got me hooked on using the Vaseline creamy ointment, it's not greasy, and it's cheap — under $3. It's really the only lotion that works for me, that keeps my skin comfortable between treatments. I've got about 20% coverage of P on my body.

I've used topical steroids, they’re expensive! (I don't currently have insurance.) They work well, but then I have to get a new tube. I suppose if my P were worse I'd be less cheap about it.  I'm just so used to it, I've been resigned to it forever.

And another thing, why didn't my derm tell me that you couldn't go off steroids without a flare up? You'd think that someone would've explained it, but, I've encountered some mediocre derms.

I was ready to use Exorex, but now, why spend the dough? It seems to be a glorified coal tar that doesn't smell bad, but then I read a letter that said it stinks!  That was the turning point for me.

So here's the new regimen, after reading oodles of your archived letters. Salmon oil (never tried this but I have a very low fat diet and maybe it'll help), an evening soak in the bath, slough off the old skin (no regular soap) and slather on Mg217 tar ointment and cover up with pj's and light socks. AmLactin lotion in the morning. I got the AmLactin lotion from Mom, and found while using it for my dry face that it was better than anything. I then used it around the hairline, behind the ears where I tend to flake (esp. when I scratch). So I put it on everywhere in the morning when I can't stand the smell of the road on my body. Everything feels good today! (Day two)

But can I keep up the regimen? That is the hardest part.

Thank you for such a wonderful resource.

(New Hamshire isn't all bad, with the leaves at peak color, it's glorious!) –Liza C.


Ed’s Response:  Sounds like your P is chiefly exacerbated by dry skin.  AmLactin is 12% lactic acid which, like glycerol, helps the skin retain moisture.  Vaseline is, of course, a famous moisturizer/emollient.

I was just reading something the other day — probably NPF literature — that hammered on the importance, for flakers, of keeping the skin moisturized.  Not just the lesions, but all of the skin.  I am reminded of this, personally, when lesions start to crack, especially those on my hands.  Here in Kentucky we’re having a cold snap and, predictably, I’ve got some cracked knuckles that make work at the keyboard ... interesting. 

Why don’t derms tell you stopping your topical steroids is likely to make you flare?  That’s a good question, Liza, and I don’t have a convincing answer for you.  Perhaps there’s a percentage of flakers who do NOT flare when they stop using topical corticosteroids.  (I’m sure it’s a minority percentile.)  Perhaps derms hope, when and if you must stop using topical steroids, they can “dissolve you into” an alternative and avoid the flare. 

As far as I know, there are two reasons to stop using topical corticosteroids:  One, you should stop if their effectiveness diminishes; two, you should stop if your skin shows signs of damage or there are other indications that the steroid is systematizing and up to no good.  In my 13 years of flaking — all of which time I’ve used some kind of topical steroid except for a few months trying Dovonex and a few glorious months of lesion-free life using cyclosporine (oral systemic) — I’ve never had symptoms of topical corticosteroid over-use.  But there have been plenty of times when a particular topical stopped working.  Eventually my derm and I found a cyclical pattern of steroid use that seemed to work.  It involved several different steroids, from very mild cream to a very strong ointment, used in revolving succession, tube at a time.  And you're right, it is VERY expensive.  Fortunately, I am insured.

Someone once said to me, “The difference between having insurance and NOT having insurance when you are a flaker is this:  If you have insurance you work towards getting rid of your lesions.  If you DON’T have insurance, you work towards getting ALONG with your lesions.”  I guess that’s true.

Let us know how you fare on your regimen, Liza.  -Ed

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