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P, Genital P and HPV
Hello Ed, Just perusing your archives again, as I've been doing off and on the past 4-5 years or so, and I noticed the HPV (human papillomavirus) and P question, just thought I'd add a data point, even if it is a negative one.
I started with P when I was 17 (am 32 now), and it has progressed slowly and is still rather mild — maybe 60% scalp coverage, nails, and a few other spots, nothing that really affects my life. I have had HPV for a year and a half now, and have noticed no real change in my P. Sure, it's gotten ever so slightly worse, but then again, P has been doing that every year for the past 15 years.
Based on what I've read on your site, I'm going to order a course of Kalawalla, will let you know how it turns out in 3-6 months. I tend to keep detailed notes, so you're sure to hear about my experience, good or bad.
I hope Raptiva is still working for you! In trying to figure out if you're still on it, I found that it's quite hard to read through your past briefings, so I ended up typing in months and years into the URL until I found the pages. It might be nice to have a list of briefings on some page somewhere - they're very useful pages.
Thanks for hosting such a great site!
Ed’s Response: Thanks for writing, Tom. I'm NOT on Raptiva anymore, but trying Humira. I made this decision because, after 12 months on Raptiva I was very happy with skin clearing but knew going in it wouldn't help my PA, so I withstood the debilitation as long as I could. Humira is firstly a biologic for rheumatoid arthritis (RA) but shown to work for PA, too. My rheumy says she has lots of flakers taking it with positive effects on skin as well. So, I'm into my third month on it, now. Haven't had a serious flare, though there has been some return of skin lesions and it appears to be spreading this Spring. I'll try to give Humira at least a year, too. Meanwhile, my knees are like new! I'm climbing stairs like a normal person again! For that I'm grateful.
Good idea on the Briefings. I think what I'll do is create a directory page that lists Briefings and the subtitles starting in January 2005. I can see from the site statistics that the page is viewed a lot, but I rarely get comments about the contents, so don't know what is/isn't important or useful. Your feedback helps!
Thanks again. -Ed
Ed, I'd like to add in one more bit of information for my fellow sufferers out there. I omitted in my original assessment that my P also affects my scrotum, anus, and the ring around my penis where I was circumcised. The rest of my torso, arms, and legs are completely clear except for a dime-sized spot on each knee.
I can control P in this region with small amounts (5-10g/year) of prednicarbate, a medium-strength topical steroid, but putting steroids on my groin is not the best of things for any future children I might want to have. I tend to just put up with the itching and flaking most of the time until it gets bad enough that I want to do a course of 3-4 days of twice a day application to affected spots in the entire region. This has worked better than using the topicals just, say, once or twice a week every week. I use less grams of the topical per year, and with better effect. The groin P is also sensitive enough that putting Olux foam on my scalp P will cause my groin to improve slightly — those topicals really do go everywhere!
My P, thankfully, hasn't affected my sex life much, the only issue being when my penile P has become chaffed during sex. And this is the reason I would recommend that any P sufferers not circumcise their children. The area of scarring seems to be a trigger point for my P and is confined to just this scarred tissue, so I think it's related to the circumcision, and since this is only occasionally distressing part of my P, I wish my parents had chosen differently after my birth.
I'm glad the Humira is working for you. It's great to see that there are now so many options for P, with more coming out every year, even if my case doesn't seem to call for expensive biologics. Just knowing there are options is very reassuring!
Best regards, -Tom M.
Ed’s Response: Thanks for the additional information about your genital P, Tom. We don’t have that many good reports on what it’s like, but I KNOW lots of male readers are going to be nodding along as they read about your case. I did.
I share all your symptoms as described here — or did a few years ago. Since starting the systemics in the late 1990s (Methotrexate, Cyclosporine....) the genital P has been considerably less of an issue. I tend to get flexural P in that area, which itches terribly but, when scratched, burns badly (which some might say is a worthwhile deterrent to otherwise unacceptable social behavior). I’m going through it right now as Humira, which has pretty much eradicated all PA pain, is fighting to keep my skin under control and, so far this Spring, losing the skirmish.
I’ll never forget the experience of P on the anus. When it cracked I thought somebody was shoving a bayonet up my ———. I remember my derm prescribed a topical corticosteroid that also had an antibiotic in it. Its name started with a “V.” It worked well and quickly — but not, I thought at the time, fast ENOUGH.Psoriatic inflammation on the skin “left over” from a circumcision isn’t rare among male flakers who have genital lesions — at least that’s what I was told when I joined the ranks of those suffering. Fortunately for me, it’s always responded well to hydrocortisone cream. I get the flexural inflammation on the circumcised part of my penis, too, which gives one pause because that’s not typical skin tissue (but nor is the tissue inside our knees, which can also inflame in a manner called “psoriasis” a.k.a. psoriatic arthritis). -Ed