Dear Ed: I just recently found your website for all of us who have the dreaded P. I found it while I was "working" late one evening. I laughed for a good half hour and then went home. Due to computer glitch, I cannot e-mail you directly from the page so I am doing it though my company e-mail system.
I am currently 28 and have had P since I was 12. When I was diagnosed by my general practitioner, his comment to me was, "Well, it might go away if you have a baby." Nice thing to say to a 12 year old. I have been on almost everything. UVA, PUVA, Temovate, Dovonex, Tars, multiple Corticosteroids, and currently I am on Tazorac. I have been on it for 10 days. It's great for the flakes, terrible on eliminating the red. My Derm wants me on Methotrexate. I am a bit tentative because I am female and because I am so young. What has helped me the most has been PUVA, but lately the pills make me vomit and I do not have much flexibility in my schedule to drive for 45 minutes to the derm's office. I will try for home UVA. Maybe I'll get it. I am on my eighth derm (the last 2 changes were move-related).
I have had some interesting experiences with Derms. My first, second and third derms wanted to put me in a UVA booth for eternity. The fourth introduced me to PUVA. In two months, I was so cleared up I would have named my first born after him. After 1-1/2 years, I returned for more PUVA. In two months, again, I was cleared up. But the P only stayed away for 1 year. I had one more PUVA "session" with that derm. I left him because he called me fat. I went to another who is totally against PUVA. He put me on Dovonex. Great at first. The greatness wore off after about a month. He would not prescribe PUVA and neither would his cohort. I was again in search of a derm. This time I went to my PPO book. BIG Mistake. [The group I found had] no personality. They would not listen to what I had to say. Thus, I left again. This time, on the recommendation of an associate, I tried his doctor. We tried the antibiotic/cream/ointment therapy. It controlled flair ups but did not relieve the unbearable unsightliness of the dreaded P. I am now off of the antibiotic and using Tazorac and Temovate.
Being 12 with P was horrible. I was told by my grandmother it was so bad because I didn't bathe enough. My doctor then told me to take 2-3 minute showers. No baths. Can you get clean in 2-3 minutes? I didn't follow that instruction. My grandmother, in her infinite wisdom, showed me an article which said that olive oil helped clear it up, so my parents forced me to try that remedy. It helped, NOT. To save my classmates as well as to hide my shame of P, I changed in a bathroom stall for gym. Thank god, I did not have it on my arms or my legs. Instead, I had it on my face, scalp, and torso. Because of my hiding, my fellow students commented behind my back (they must have thought I was deaf), "Does she think that she is too good for us? What does she have that we don't?" God, If only I had the nerve to show them. What would they have said then?
The first time PUVA worked I was a senior in high school. My whole personality changed. I didn't feel like I was hiding anymore. My best friend from high school, who is still my best friend, understood because her mother has P. Her mother and I still compare how bad our P is and I shared your website with her.
Now I work in Corporate America. I am not ashamed anymore. I realize it is a part of me. I have come up with a standard speech when someone asks me what happened to my arm, did I burn myself, and is there anything I can do about it. I have met very few people in Corporate America who have the dreaded P. I am sure they are out there, hiding just like me most of the time.
My father feels it's a necessity to constantly be free of P. He doesn't seem to understand, I am not so concerned.
I would like to close my little P autobiography by thanking you for your beautiful website. I will look at it as often as I can, especially when my life is a little mundane. -Kelly
Ed's Reply: Thanks for the autobiography. We freely admit around here that we enjoy sharing each others' candid albums. I'll tick off my comments:
About 2-3 minute showers. I knew them first as "sea showers," what sailors are forced to undergo when prolonged voyages require fresh-water rationing. Can you get clean? I guess you can get clean enough for the Captain and the poor slob bunking next to you. I hadn't heard such a regimen prescribed for psoriasis before. I had heard it prescribed, though, as a palliative for dry skin. As ironic as it may seem, waterespecially HOT watersaps skin moisture unless it's quickly locked in after it's absorbed. Hence the ad blurbs about lotions that are supposed to "lock in" moisture after bathing. I've written before about my Hispanic cardiologist who had more worthwhile things to say about my skin than the first dozen derms I visited. He said the cultural hygene habits of we entrenched Anglos more often than not did us disservice by stripping away the natural protections our skin tried to generate. In addition to downplaying the virtues of hot water, he told me to limit my use of soap "only to those areas where you've got to use it." I got this advice from him before I was visibly psoriatic, but cutting back on the hot water exposure and intense soap-scrubbing helped my chronic rashes.
About UVA/PUVA. Your experience echoes what I've heard repeatedly and experienced myself; namely, UVA/PUVA, like everything else, works for some people for some period of time. Never for everybody, and never forever. (Which is, quite frankly, why I've not invested big bucks in UVA home treatment machines. I've always been afraid the therapy would wear out before the concomitant credit card debt!)
About antibiotic/combo therapies. I've been taughtand have no reason to discountthat antibiotics have a role in psoriasis treatments when/if infection is a factor. Unfortunately, infection can be a significant factor. That one of your derms prescribed a combo therapy, in which an antibiotic was one of the ingredients, would suggest to me s/he suspects infection. Don't ever downplay the seriousness of infection! (I heard of one lady debilitated near to death because of infection stemming from untreated psoriasis on one arm!) And there's another little nasty necessity about antibiotic therapies that runs counter to what we've come to practice with other psoriasis therapies; and that is, antibiotic therapies typically have a "course"a beginning, middle and endwhich, if not followed, tends to make the whole effort worthless. Check this out with your doctor, but I believe I'm correct in stating the amount of an antibiotic prescribed, and the timing of the dosage, can be critically important to its effectiveness. By the way, as far as I know (which admittedly isn't far), the only good way to get a handle on infection is through a blood work-up (white cell count is indicative). I'm told psoriasis-related infection can be serious even before it's visible on the skin.
About parents' concern. My folks and I have lived far apart for almost thirty years, though we remain close, talk by phone frequently, and get together at least once every other year. Both my mother and father have followed my psoriasis closely ... morbid me, I've even sent videos! ... and you would think they know what to expect. Not too long ago a business trip enabled me to make a brief visit. They picked me up at the airport. I was wearing a dark overcoat. While we stood at the baggage carousel waiting for my luggage, my mom frowned, wacked my shoulders several times with the palm of her hand and said, "Lord look at the dandruff! When did this start?" Filtered, I understood she meant to say, "Welcome home, Ed."
Stay in touch, Kelly. Maybe we'll end up bumping shoulders in Corporate America. Ah, what a snowstorm that might make, eh? -Ed