December, '99 | Briefing | Mail | Don't Say This | Articles | Other Places | Archives | Send Mail | Ed Dewke | Legal Stuff


Cyclosporine in Redwoods Land
from Harry H.

Hi, Ed— I wrote you a while back concerning ulcerative colitis and psoriasis [see links at bottom]. That was when I lived in Virginia. Now I'm in Northern California (way north!), where there is only one decent derm within a hundred square miles—and HE'S so booked up that it takes three months to get to see him! I was fortunate enough to get to see his RN—a very competent woman who is scads better than many of the Dr.'s I've seen (not too surprising, what with my track record!).

Anyway, I've been cleared to take Neoral (the brand name of cyclosporine, as many of us know), and have been on it for a week now. Jeezum Pete, Ed, it's amazing! Within two days it had slowed the rate of growth by about 75% (based purely on how often I had to take a de-scaling soak)! Now, after only one week I have some completely healed lesions on the back of my hands (each had been about 2.5" by 1.5", fissured and spontaneously bleeding-prone. My ears are completely normal (yeah, baby!), as is my inverse P around my Lollapalooza.

The side effects for me have included mild nausea (which passes within an hour), medium-mild lethargy, and major aching feet (?). The latter may be due to something else ... I don't know. Anyway, I'll keep you informed. I have to get my blood pressure and blood work-up every two weeks—not a bad price to pay, considering that I'm 60% covered!

Wow! have you ever read the pharmaceutical circular that comes with Neoral? It's a friggin' tome! But not as bad as Methotrexate in terms of nastiness. I hope your Methotrexate regimen is still going well for you. I enjoyed reading your journal about your Methotrexate therapy. MTX scares the hell outta me, though. The thought of potential melanoma (from years of PUVA) or kidney dysfunction doesn't exactly make me happy, either! I was surprised to hear the derm RN tell me I am (was??!!) 60% covered ... I thought it was less if you counted the clear skin between the lesions—but not so, I guess. Later, -Harry H.

*****

Ed's Response: Good to hear from you, Harry. One of the lesser known treats in your new neck of the woods is the world's largest banana slugs. (That's MY claim, nothing official. However, a four to five inch yellow-green banana slug in Humboldt County, California, is not unusual.) There's nothing quite like taking a stroll through a redwood forest (Humboldt College nature trail in Arcata, California) when the banana slugs are mating. Two slugs copulating form the perfect Yin/Yang symbol. (Also note: I saw this in 1970 and was probably under the influence of a psychedelic. When nature surrounds you with a symbol of universal balance while you are young and on drugs the occasion is unforgettable. Which is probably why I still gesture the peace sign "V" to obnoxious drivers and say "far out" when lovely women smile at me.)

I'm not surprised that competent derms are in short supply in Humboldt County. As I recall the natives there, vanity was in too short supply to support the bread and butter business of a greedy dermatologist. The average Humboldt Bay citizen might pursue medical attention for a stubborn skin aberration, but I can't imagine many forking out the big bucks for cosmetic perfection. In other words, clear up the melanoma but to hell with the warts and sebaceous cysts (boils). But you know, Harry, you're ... what? ... less than a day's drive from Portland? That's NPF stamping ground and known home to several good P-derms. It may not be convenient if out-patient treatment is called for, but those twice yearly visits for prescript updates might make it worth the drive.

But it sounds like all this may be moot if the cyclosporine continues working for you. Until one of those thirty-odd drugs-in-trial the NPF wrote about last fall become available, cyclosporine is all I have left—if the MTX fails me.

You raise an interesting question about percent-of-coverage. You say your derm claims you are 60% covered, but you reckon this can only be so if you "count the clear skin between the lesions." I believe you are correct in thinking the clear skin between the lesions should NOT be counted. The rough guide is that the size of the palm of your hand equals 1% of your skin. It can be quite fun for you and a significant other to apply this in an exercise to determine your own extent of involvement. (If I remember correctly, to ensure accuracy I kept asking my wife to re-measure the lesions on my Lollapalooza.)

The percent-involvement business is, in my opinion, a not very useful way to calculate the severity of one's P. For one thing, as we all know, when a plaque lesion quiets down, even if it disappears, it is not gone. The odds are a quiet lesion, like Arnold Schwartzenegger, "will be back." Example: My Methotrexate regimen has quieted all lesions except those on the backs of my hands, calves, ankles and feet. The rest are either pinkish and nearly invisible, or invisible altogether. Does that mean I'm less severe than I was before I started the MTX therapy? I don't believe so, especially when we all know MTX therapy, like all current therapies, is a palliative and not a cure.

The kind of P a person has and its impact on living should also be considered when determining the severity of one's P. A few lesions in all the wrong places can create many more problems for one person than ten times the involvement, but in different places, on another person.

So, while it's conversationally useful to say, "I'm 60% involved," or "Jack's 30% involved," I try to make it a point to draw no conclusions. Your case, for example: It sounds as though the lesions on your hands were terrible. If that were the only P you manifested, I would be inclined to consider you "severe." And the Lollapalooza? Oh gosh. It hurts too much to write more.... -Ed

More Ulcerative Colitis
Methotrexate Out for Harry, In for Ed

This Month's Mail | Archives

www.flakehq.com