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Treading Water in Michigan
from Sue B.

Hi Ed:  As with many, many others, I stumbled on to your site while Googling Ultravate. Mine is the same sad story as the rest, but not so severe.

Have had P for about 15 years.  I have 11 aunts/uncles and 28 first cousins and about a million second and third cousins, and yep, just like Tigger, I'm the only one!  With P, that is.

My P is on my fingers and feet and yikes! that's hard to live with. NO shorts/sandals/flip-flops and forget any kind of pantyhose. If my feet could tolerate pantyhose, I would shred them with my fingers trying to put them on! Hmmm, maybe that's not such a bad idea... :) 

But with a job in accounting, it's tough to deal with paper all day. It's sooooo drying. And usually I don't even know I've cracked until I see blood spots on papers that have to be retained forever.  I have been using Gold Bond Ultra Healing Hand Lotion with nice results.  It's more of a cream than a lotion so it's soothing.  Plus I try not to use too much soap and/or water. I know it's gross, but when I go for a day and don't wash my hands, they seem better. Maybe just wishful thinking.

The derm (well the PA) keeps telling me to use Dovonex and Ultravate with different application schedules: Ultravate on weekends, Dovonex weekdays. Ok, that didn't work, try just the Ultravate MWF and nothing the other days. Ok, that didn't work, well try Ultravate for two solid weeks, but don't use too often as there are harmful side effects and you will become “immune” to it. Ok, that worked for the two weeks, but then after not using it, the P returns. Ok, then we'll send you some information on new laser treatments for P, but we need your correct address because the mail was returned (funny the bills never get returned!).

Unfortunately, living in a small Michigan town limits my ability to switch to a new derm. So that led me back to the internet.  I read an online chat dialog transcript on WebMD.com with a research derm who stated he had never had any success treating P on fingers. That made my day, let me tell you — NOT!

Anyway, enough feeling sorry for myself when, after reading mail at your site, I should be thankful that I don't have it worse. Even cases like mine do hurt though, and not just mentally.  I do not have an understanding family and that's tough, too.  My son got a mild case of athlete's foot in high school and FREAKED OUT thinking he had P.  Sheesh!

Thanks for letting me bend your ear, Ed. And thanks for this website. Not personally knowing anyone else with P, reading here makes me not feel so all alone.

Regards, -Sue B.

*****

Ed’s Response:  You’re very welcome ... and welcome here, Sue. 

Your comment about the research derm and the WebMD on-line chat has me gritting my teeth.  Maybe that “research” derm ought to get out and practice among the P population a little more.  If he meant he never had success treating P on the fingernails I could understand ... because derms don’t like to wait nine months to see a result.  (Actually, the rate of nail growth varies and, if you have P in the mantle of the nails you can usually tell within a couple of months if a treatment is working because new growth coming from  underneath the cuticle will look ‘normal.’)  Now, having said all that, I must admit that no topical treatment has ever helped my nails.  Only systemics have done that.

If the research derm meant lesions on the fingers, for many flakers the answer is overnight occlusion of a topical corticosteroid under food handler’s gloves.  I’ve found my finger lesions to be consistently responsive to this.  Two or three nights of occlusion usually thwarts these lesions....  Here is a succession of photos of my fingers and nails over the last few months (while I’ve been trying Raptiva I’ve not used the occlusion therapy because I wanted to see what the Raptiva will do on its own). 

 

 

(This is a succession of photos in a rotation loop; it may take a moment to load.)

 

I also had to laugh at your story about the PA trying to rotate your use of Ultravate and Dovonex.  Is your PA aware that Dovonex is often MIXED WITH a corticosteroid for same-time application?  They even have a manufactured version of this in the UK called Dovobet, which is Dovonex with betamethasone.  The theory behind this — which works for quite a few people — is that using both in combination diminishes the side effects of the corticosteroid while “pumping up” the palliative power of the Dovonex (calcipotriene, topical vitamin D3).  Some derms in the U.S. have prescribed mixing a glob of Dovonex with a glob of corticosteroid in the palm of your hand then applying it to your lesions.  Or perhaps there’s now a manufactured compound of the same thing available in the U.S. and I haven’t heard of it, yet.

Despite your family that could be more understanding (!), your sense of humor shouts through the lines of your email.  If you don’t get to share that winning manner with kin, you’re welcome to do so here whenever the inclination tickles you.  -Ed

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