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Chapter Eight
"The Litany of Treatments"
2008 Postscript: Gene therapy ... Biologics ... Fixatives and Snake Oil

Tar

It's been known for eons that tar, applied directly to psoriasis lesions, can be beneficial. How do you suppose that was discovered? Did some medieval flaker fall into a tar pit and emerge flake free?

“Sure, I stink like hell, and next thing you know they're going to dip me in feathers and run me out of the village — but geez! Look ma! No flakes!”

“Coal tar” is, in fact, the kind of tar from which psoriasis fighting products are derived. Get this definition of coal tar, quoted verbatim from the Random House Dictionary of English Usage (Second Edition):

 

... a thick, black, viscid liquid formed during the distillation of coal, that upon further distillation yields compounds, as benzene, antracene, and phenol, from which are derived a large number of dyes, drugs, and other synthetic compounds, and that yields a final residuum (coal'‑tar pitch'), which is used chiefly in making pavements.

This leads me to conclude the best possible career for psoriatics must be road construction.

“You're getting into your work a little too literally there, aren't you Ed?”

“Maybe, but look boss, no flakes!”

I've not hired a single derm who could tell me precisely why coal tar derivatives help psoriasis. Lord knows it's a sticky business . . . and who would want to delve too deeply into the research?

Coal tar derivatives have been a part of my therapy since I finally put my foot down and precluded liver petrifying systemics (drugs taken internally). Most of the time I use coal tar based products to combat my scalp psoriasis. There's a concoction my pharmacist calls “scalp cocktail” (somebody's idea of a bad joke) that I glom into my hair before occluding my head in a taped down shower cap at night. And yes, it does smell rather like a fresh paved parking lot in Phoenix in July. (Not a recommended therapy when impressing one's significant other in the sack is important.) The shampoo I use daily is black as pitch and smells like pavement, too.

What's irritating is how expensive these products are. I buy this obnoxious shampoo at K‑Mart™, of all places, and for some reason the barcode is never programmed into their cash register system.

“Do you remember what the price was on this?” the young ladies always ask me while turning over the itsy bitsy plastic bottle.

“Seven forty,” I say.

“Oh my, that's expensive shampoo!” they inevitably exclaim.

“And darn well worth it!” I retort while winking. (I'm inclined to add: “Look ma'am, no flakes!” but have resisted the impulse so far.)

Some psoriatics take “tar baths.” Hard to believe, isn't it? What for centuries has been considered the lowest degradation (to be “tarred and feathered and run out of town”) is for some a necessary ablution.

I have no personal experience with tar baths, but imagine one must approach them with no ego and a strong sense of humor.

“Well, Ed, you've been soaking for twenty minutes now. Time to get out and take your shower.”

“What comes out of the showerhead? Feathers?”

Occlusion

When I have work to do in our nation's capital, I usually stay with friends of mine in Arlington, Virginia. This childless couple and I have been friends and business associates for a long, long time, so they know all about my psoriasis, but the first time I stayed with them during a period of so called “occlusion therapy” was awkward.

Occlusion therapy involves applying steroid goo to lesions then covering them with plastic to seal out fresh air. This increases the potency of the goo. My derm prescribed that I occlude my scalp and my hands. That meant taping a shower cap on my head and wearing “food handlers” gloves to bed — taped to my wrists. I needed a bathroom mirror to accomplish the outfitting, which means traipsing through “public areas” on the way to bed in my friends' home.

One night I was simply too tired to wait for them to go to bed. I went ahead and prepped myself then, knowing they'd see me on my way from the bathroom to my bedroom, I just bit the bullet and presented myself to them. They were startled into speechlessness when I appeared before them in my bathrobe, shower cap and gloves. I simply said, “There's something you all need to know about my sexual proclivities.”

Then, while they were still giggling, I bade them goodnight.

Acupuncture

I was in San Francisco, mixing business and pleasure, having dinner with friends — a couple and their daughter. Somehow the subject of my psoriasis came up.

“Have you tried acupuncture?” the lady of the house asked.

I admitted that I hadn't; never even thought about it, in fact.

“You must see our Chinese doctor before you leave town.”

I've since learned that Chinese and Western medicine are formidably different and only now being seriously examined from a “comparative” perspective. But at that moment in San Francisco I knew nothing and was more than willing to experiment. You need a bit of background.

It was November, 1994. I was coming off the biggest job of my year. Nothing else of professional consequence was scheduled to happen to me that year. My psoriasis was flaring. I was less than two months into a volatile separation from my second wife. (In retrospect, I'm just glad these friends of mine hadn't recommended heroin. I was in the mood to try anything.)

One thing led to another and the next morning I met the Chinese doctor whom I'll call here Dr. Chung.

“I understand from our mutual friends that you have psoriasis?” That's pretty much how Dr. Chung opened the conversation.

“That's right,” I said. “Been having problems with it for four or five years now.”

“All right. Let me see the extent of its involvement.”

I blinked a couple of times but finally figured out I was being asked to strip, so I did.

“Oh my. Yes. We have a problem here.”

Dr. Chung did a lot of hmmm‑ing while surveying my torso. The psoriatic lesions in the groin area were particularly hmmm‑ful.

“Considerable sexual activity lately?” Dr. Chung asked.

“Quite the contrary,” I volunteered, wondering if I should tell him about my wife's recent abandonment.

“Good,” Dr. Chung offered. “Don't have sex and don't eat shrimp.”

Don't eat shrimp? Where the hell did that come from?

“Okey dokey,” I said. 

Dr. Chung dutifully noted that my problems went beyond the psoriasis. “Major pathways in your body are blocked,” the doctor said, “and we must open them as first step.”

I didn't then and don't now have the foggiest clue what a “major pathway” is. But I knew I felt like hell, and that flaking was only the surface of my problems (no pun intended). So I allowed the doctor to proceed to open my major pathways “as first step.”

This involved sixteen needles, a maze of wires, and something that looked to me like a 12‑volt car battery. Evidently, “opening my major pathway” was going to require electro‑shock therapy.

Once I had been stabbed and wired appropriately, the good Doctor stepped away from my gurney to hum Chinese tunes and write my prescription for future treatment. I lay there lurching every twenty seconds or so when the battery let loose its volts into my needles hence into me. All the while I listened to the good Doctor hum, wondering what prescription could take so long to write.

I also tried to sense whether or not my major pathway was unclogging. I had this vision of an L.A. freeway in the twilight of a diminishing rush hour....

The prescription — written in Chinese characters — was for an herbal concoction. The good doctor took ten minutes to explain to me, step-by-step, how to prepare my “tea.” Problem was, I live in Kentucky and the doctor's sources of herbs were in San Francisco.

“If you pay,” the doctor told me, “They will ship.”

I said “Sure.” After all, I was sitting there on the gurney, nearly buck naked, recently having had my major pathway cleared of traffic by God knows how many doses of how many volts, and I was expecting a cure.

A week or so later, back at home in Lexington, the box of herbs arrived. A box full of little sacks labeled “1,” “2,” “3,” and so on. I referred to the notes Dr. Chung had given me. Oh yeah. Boil water, add “1,” boil for so many minutes, add “2,” boil for so many more minutes ... eventually it read, “steep” for so many minutes on low heat; then, take off heat altogether. Let cool. Drink at room temperature. I did.... And then I vomited until there was nothing more to throw up but pale yellow strands of bile.

I'm sorry Dr. Chung, but what looked like dried sliced mushrooms, bits of honeycomb, dead flowers, insect parts and ground bone meal did not do me well. I went back to my room, sat on the edge of my bed, and scratched my calves until the psoriasis flakes formed little piles on the carpet next to my feet.

Oddly enough, I kept the little bags labeled “1,” “2,” “3,” and so on in my recently cleaned out by former wife cupboard for many months. Finally, a new main squeeze happened to open the cupboard one evening and said something unprintable.

Basically what she was getting at is that it didn't smell good.

I said, “Sorry, that's my herbal medicine.”

She volunteered that herbs were much tastier when consumed fresh — and then told me what she thought I should do with the not-so-fresh herbs I'd been sent from San Francisco.

Shortly thereafter, I followed her advice.

Intralesion Steroid Injections

After about two years and several thousand dollars worth of potions and unguents, the usual waxing and waning of those lesions' activity, and some enlargement of lesions, my derm finally decided to try direct intralesion injection of a steroid. It worked almost overnight.

I thought I had been cured.

I was so ecstatic I wrote him a letter gushing with thanks. But I refrained from asking why he waited so long to share this miracle cure with me.

I was nearly lesion free for six weeks; felt like running around town in my skivvies and shouting, “Hey people! Look at the beautiful skin on this hunka‑hunka‑hunka man!”

The lesions were just beginning to redden again when it was time for my next regularly scheduled visit to the derm. He thanked me for my kind letter, expressed satisfaction with the way I had responded to the injections.

Then I blew it. “Doc, even my scalp stopped flaking!” (There had been no injections into my scalp.)

Grinning stupidly, unaware of what was going on in my derm's noggin, I went on: “And remember, you didn't inject my wrists or hands, either.” (He'd said there were too many blood vessels and nerves close to the surface of the skin to “risk” intralesion injections in these areas.) “But look, Doc! They cleared, too!”

I was so happy I could have kissed him — or, well, more likely the pretty nurse who was attending to me with him.

Doc and the nurse exchanged knowing glances. Finally, Doc said, “Well, I guess we can't go doing that anymore.”

I was flabbergasted. “Whatcha mean? It cleared me for six weeks! I'd gladly do the needles again. What's wrong?”

Then he explained to me that steroids can have very sinister side effects if they spread beyond their intended area of the body. My scalp and hands having cleared up suggested to him that the steroid had spread throughout my body, or, as he called it, systematized.

“But gosh, Doc, I've had no side effects.”

He said he was glad to hear that but, nonetheless, the risks were too great.

I went home depressed all over again. Great! Here's the one thing that works and I'm being cut off already.

He refused to give me any more intralesion injections for six months. By that time I was flaring mightily. I had a business trip planned for the east coast and wanted whatever necessary to avoid meeting clients looking like a leper.

I went back to the derm and almost got down on my knees to beg him for the injections. He sat there, reviewing my file and finally relented — a little. He instructed the nurse to limit the injections to so many CC's. “That won't cover but maybe one arm and one leg,” he said to me. “So I suggest you pick your most egregious lesions and prioritize them; then we'll hit as many as we can within the limits of this dosage.”

Well, that was better than nothing. I picked the big ones that were flaking the worst and drove me the craziest with itching. There were twenty, maybe thirty lesions that I would have liked to hit, but the prescribed dosage didn't get us half that far.

Intralesion injections draw blood. Despite my limited dosage, after fifteen minutes I was laying there in the examining room bleeding profusely. Two nurses were dabbing at me with cotton balls. “Hold this one there.... Hold that one over here.... You better wait a few minutes before you get dressed.”

I evoked my Steven Segal voice and said, “Unless you give me more dope, I'm going to run out into the receiving room and bleed all over your waiting patients.”

For a moment they thought I was serious.

I was sick for a week as a result of the injections, which evidently did systematize because all my psoriasis improved — not just the lesions they hit.

When I say sick, I mean throwing up in the mornings, shaking with fever in the nights. This could have been psychosomatic, or it could be my illness had nothing to do with the intralesion injections. I don't really care. In my mind I associated being sick with having the treatment and, subsequently, it's never been repeated nor have I asked for it.

It's back to the potions and unguents for me. Back to the perpetual waxing and waning. Back to an acceptance of the fact that every day there will be visible lesions, likely flakes, and unending itch.

Over-the-counter products

As you become acquainted with psoriasis and learn to live with it you will start paying attention to a gaggle of non-prescription remedies — plant extracts, mineral solutions, things you take orally, things you apply topically, places to go on vacation, things to wear, and so on (and on). And with each non-prescription remedy there's a platoon or two of psoriatics who evangelize the efficacy of the product.

We must have some faith in truth-in-advertising, so we cannot thoroughly discount the claims made by manufacturers and their faithful clients. Why, then, do so many of us pay outrageously for prescription products that sometimes work and sometimes don't?

I've concluded the answer is that psoriasis, probably like most other diseases, is a compound condition, like an equation with many variables. For me the equation might read:

                 a + b + c + d = Ed's Psoriasis

For another psoriatic, the equation might read:

                a + e + f + g = Ruth's Psoriasis

Yes, there is a common denominator — a in these equa­tions — and that's what the research is going after and hasn't completely discovered, yet.

Now follow my thinking on this. Another factor of the compound is that some of the variables are critical and others are not. For example, I might find that adjusting my equation like this would eradicate my psoriasis:

             a - b + c + d = No Psoriasis for Ed

In other words, find a way to subtract b from the compound and my psoriasis might acquiesce. The problem is what is b?

But equally as likely, I might rewrite the equation so it comes out like this because the eliminated variable is non-critical:

           a + b - c + d = Sorry Ed, Still Flaking!

C in this case was a non-critical factor. I subtracted it but doing so was not sufficient to make me stop flaking.

It gets even more complicated (but not much more). There's a temporal quality to the variables. Ed's b, c & d are evidently critical at some times and non-critical at others. So, it's not just isolating the variable that poses the challenge, it's also isolating the variable in time.

What's all this have to do with over-the-counter reme­dies? I'm coming to that, but first let me say two more things about the equations (i.e., the compound nature of the disease called psoriasis).

First, I believe no psoriatic really knows how long their equation is. Ed's real equation may contain variables a through z. Ruth's equation may really be a and f only. Our alphabet may not contain enough letters to represent the possible variables in any psoriatic’s specific compounded condition.

Furthermore, it's difficult to determine which variables are critical and which aren't, and this difficulty is again “compounded” by the evident fact that variables are temporal, meaning they take on more or less importance over time, or perhaps seasonally.

Secondly, the elusive common denominator, a, which is now suspected to be a part of our genetic code which “allows” psoriasis to happen, may or may not be reparable. We simply don't know enough about it, yet. (More on a in a moment.)

Okay. My theory. Most (if not all) non-prescription remedies that cause psoriasis lesions to acquiesce or go away entirely (I mean vanish altogether for months or years at a time) focus on one, or at most a few, possible variables, which, if they are critical in your particular equation, means the remedy is effective for some period of time. (Remember, the variables are temporal, meaning they change in importance over time.)

If my theory is correct, it implies your experimentation with over-the-counter psoriasis remedies is rather like playing the lottery: Your chances of winning anything are slight, and of maintaining the win for any appreciable time slighter still. But that doesn't mean you might not strike big! If you're Ruth, and your psoriasis equation is very simple, a + f = Ruth's Psoriasis, you might find an over-the-counter remedy that knocks f out of the equation for a good long while.

Let's say, hypothetically, that Ruth's f is overly dry skin compounded by the fact that she moved to the Western Desert where there is virtually NO humidity. Yeah, she has a in her genetic structure, but f is her only trigger. Bag Balm™ may be the solution to her problem — for awhile.

The unfortunate truth is that few psoriatics can isolate their critical variables, even less isolate them for any apprecia­ble length of time. So the success or failure of the non-prescrip­tion remedies is nothing more nor less than an ongoing crap­shoot. Maybe you win, maybe you don't. Some of you (a slim minority of you) are likely to win big and have the win last for a long, long time; but the sheer complexity of the mathematics dictates that for most of us, going the over-the-counter route is comparable to moving through the “stages” of the Publisher's Clearing House® sweepstakes. That doesn't mean we don't enter the sweepstakes.

So what's different about prescription remedies? As you might guess, I have a theory about that, too. Drugs are pre­scribed because there are risk factors involved in their use. In the case of psoriasis prescription remedies — both topical and systemic — there is a spectrum of risk that rainbows from minor (the mild topical corticosteroids and tar-based emollients) to major (the strong systemics). When you look at Ed's equation as it's affected by a prescribed treatment regimen, the goal is this:

                 a + b + c + d Ed's Psoriasis

Note the “does not equal” indicated by the equals sign “=” over which is printed the slash “/”. Since we have no cure for psoriasis today, all prescribed anti-psoriasis drugs are directed towards thwarting our psoriasis symptoms. (Prescribed regimens, on the other hand, often involve variables on the left side of the equation, for example “no alcohol,” “less red meat,” “more ultraviolet light exposure,” etc.)

My understanding of most prescribed psoriasis medications leads me to conclude they simply work on drawing that slash through the equal sign. That's why they're not a cure and why they're dangerous. I mean, think about it: If my nature says that a + b + c + d is supposed to equal (=) flaking, and something is introduced to that natural order to stop that equation from working, there must be a price to pay (and I'm not talking merely about the high cost of the drugs).

Any derm or pharmacist worth his title will tell you that prescription remedies for psoriasis are not cures and they come with potential price tags beyond what you pay in cash. The irony (and the intuitive proof of my theories) lies in the statistics of the success of these drug regimens. Typically, only 80% of the cases are positively treated for any appreciable time through any existing drug regimen. Conversely, that means you have an 80% chance of responding positively to some prescriptions for some undetermined length of time.  Why do you think we keep going back to the derms to try new things?  I told you, the disease is resilient.

I believe the strength of the equal sign in our individual equation depends on what's to its left in the expression.  The number of variables, their criticality, and their temporality all affect the resiliency of that equals (=) sign. Consider it like this: the more variables you stack up on the left side of the equation, the tougher the “equals” (=) sign becomes, and the “tougher” the slash must be to penetrate it. Ruth's a + f = Psoriasis made for a pretty penetrable equals (=) sign in her equation. As a matter of fact, Ruth didn't even have to run a slash through her equals sign because in this mathematical metaphor a slash indicates a prescribed drug. Bag Balm™, an over-the-counter goo originally developed as relief for livestock whose udders were dry and cracking, proved to be the trick for Ruth. It eliminated her one critical variable at that moment, which was overly dry skin.

On the other hand, Ed's a ... z = Psoriasis is a helluvalot more complicated. For Ed, Bag Balm™ may work for awhile, but not likely for long. Folks, we're talking about potentially complex equations here. If they were simple, we'd have found either (a) a cure, or (b) a sure-fire way to put a slash through every psoriatic's “equals sign” by now.

Fact of the matter is, the equations are so complex, so apparently individual, that the most effective road to managing the disease called psoriasis (at least at this time) is poking at the equals (=) sign with increasingly dangerous frenzy until you find a slash mark that can really penetrate the equals sign. And that's what our existing prescription approaches attempt to do. They do so at increasingly significant risk, depending on the strength, or impenetrability, of your specific equals (=) sign and the concomitant strength required of the slash mark that goes through it.

Ed's psoriasis may be engendered by the fact that (a) he has the proclivity (most certainly), (b) he's allergic to his climate, (c) he's in midlife crisis, and we could go on with (d) through (z). Consider the left hand side of this equation an on-ramp to the highway called FLAKING. The more the variables, the longer the on-ramp, the greater the acceleration, then, BANG! Ed comes to the “equals” (=) sign — the point at which he enters the highway and starts to flake. To prevent Ed's psoriasis from passing beyond this point (that is, manifesting) the severity of the remedy must be equal to or greater than his accumulated acceleration at that point.

True, it would be nice if Ed could just pull a spark plug, kill the car and coast to a stop at this point, but that's beyond the range of our current technology; it is, in effect, what we're trying to do with dietary approaches and genetic research.

The dietary approaches to psoriasis resound from the truism that we are what we eat.  Hence, something we’re eating is either causing psoriasis; or something we should be eating will prevent it.  Why it just happens to us and not everyone who eats like us is what makes the difference between a slash mark through the equals sign and a true cure.  No matter.  If you can obtain a psoriasis free life by following a diet, you probably don’t give a damn what it’s called — “cure” or something else.

The genetic research is aimed at defeating the a variable, the “common denominator” it's presumed all psoriatics share. In this context you can think of the a variable as “the number one spark plug.”

The over-the-counter remedies treat “spark plugs” as a single variable or combinations of variables on the left hand side of the equation, and “pulling of the spark plug” — if it happens — is the desired consequence of trying the right remedy at the right time. Ruth's Bag Balm™ defeats her dry skin problem, which just happens to be her one and only psoriasis trigger at this particular time, and in her particular place. Lucky Ruth.

Prescription regimens are much more drastic. They are the equivalent of planting a stop sign at the top of the on-ramp. Think about it. Here you are, going gangbusters to build up steam and get on this highway called FLAKING — because, whether you like it or not (and invariably you do not) that happens to be where you're headed — and suddenly you have to screech on the brakes and stop the car at the top of the on-ramp. The brakes grind, the tires squeal, the baby crashes through the front windshield. These are the metaphorical equivalents of what can happen to you on prescription regimens, which is why trained professionals — derms — are entrusted to guide you.

Derms will analyze your lifestyle and prescribe regimens that both “try to find the right spark plug to pull” and throw up a stop sign at the top of the on-ramp. That is, they'll dabble at exploring lifestyle problems with you (“Are you stressed?”) and recommend non-prescription solutions (“Cut down on your alcohol consumption.”) while they'll simultaneously try to drive a slash mark through your equation's equals (=) sign with a prescription regimen.

But derms don't want to risk a crash and burn accident at the top of the on-ramp, brought on by some adverse reaction to a prescription (i.e., the wrong stop sign in the wrong place and the wrong time). Because they're so totally ignorant of your specific psoriasis equation they're mostly stabbing at the dark when it comes to changing plus (+) variables to minus (-) variables on the left side of your specific equation. In other words, they don't know how long your on-ramp is or from what it's made (aside from one thought-to-exist common denominator: the a variable).

Since psoriasis is so common (approximately four to five million Americans are believed to be psoriatic), there is every reason to think what I call the a variable exists and is genetic. This is the focus of some of the most recent research. No current over-the-counter solution addresses the a variable. Nor does any prescription medication, topical or systemic.

We know so little about our genetic code that it may be decades before we invent countermeasures, and the counter­measures we finally come up with may be so-called gene therapy that can be applied to us as adults, or it may be some in utero process, meaning we may learn to prevent the disease in future generations but maybe not cure it in our own. What we hope to discover is that the a variable is indeed a common and necessary denominator, a factor that is fundamental to manifesting the disease. If this proves true, and a can be avoided, modified, eliminated, or divested of its powers, all the other variables — whether we're Ruth's simple equation of two variables, or Ed's complex equation of a ... z — will become irrelevant because without a psoriasis doesn't happen.

That's a simplistic cause for rejoicing, because even without the a variable the equation may still exist, which means it might add up to something else. (What if subtracting a from our equations meant the flaking stopped but we lost our sense of taste? Or we became impotent?) Whatever the equation adds up to without a may be nothing, or may be something harmless, or it may be our next challenge. Nature shrugs and throws the dice. That's the way it goes.

●●●●●

Ed’s Postscript (3/19/2008-4/20/2008): This chapter is the reason I pulled Flake: Confessions of a Psoriatic off the market in 2005. All of this was written before I had tried any systemic medicine and, more importantly, before the advent of biologics.  Since then I’ve tried many of these.

Gene Therapy for Psoriasis

The promise of gene therapy for psoriasis was really heating up about the time this book was written.  In this chapter I referred to this as “the a variable.”  There had been some success in treating disease with gene therapy and we felt about as euphoric as we did after man’s first footsteps on the moon.  Anything was possible.  Then, in 1998, an eighteen year old named Jesse Gelsinger died three days after receiving his gene therapy trial treatment.  The National Institutes of Health ordered a ban on the particular kind of genetic treatment Gelsinger had not survived.  The one year ban was followed by a Federal investigation that lasted until 2001.  This was another one of those highly publicized “bubble burstings” that, in retrospect, appear to define the decade of the 1990s.

Where is gene therapy for psoriasis going today?  Anywhere?  I really don’t know.

At the National Psoriasis Foundation annual meeting in 2002, a geneticist made a PowerPoint™ presentation that was about 15 acronyms beyond what the lay member in the audience could absorb (that means me) and that’s about the last thing I’ve heard regarding gene therapy research for psoriasis. In my late 2006 interview with then-head of research at the National Psoriasis Foundation, Liz Horn, I asked her directly about gene therapy research and she responded:

Horn:  Gene therapy remains a possibility for psoriasis therapy. We just need to understand the genes that cause psoriasis. There are many talented scientists trying to answer this question... 

I think the “question” Horn meant that was being worked on by many talented scientists was “what are the genes that cause psoriasis?” — not gene therapy.  You see, in the mid 1990s when I wrote “the a variable,” I and, I suppose, others were naïve enough to think there was a gene that caused psoriasis.  By 2002 we knew better.  It appeared to be several genes that were “involved” in psoriasis.  It seems like the more they looked, the more they found.

The discovery of each new gene associated with psoriasis catapults a possible gene therapy for psoriasis further into the future.  The research becomes staggeringly complex because we are no longer talking about turning one thing off.  Now we are talking about a chain of things. And in biology, wherever there is a chain of actions the possibility of a branching set of consequences also exists. Any one of those genes may contribute to psoriasis and contribute to other things that we do not want to willy-nilly stop.

For the time being, what happened to Jesse Gelsinger, coupled with growing complexity in the case of psoriasis, makes the aspect of a gene therapy cure for psoriasis far away.

Biologics

Virtually all of the most successful biologics for psoriasis began as biologics for other immune system ailments (e.g., rheumatoid arthritis and Crohns).  Enbrel, the first biologic approved for the treatment of plaque psoriasis in the U.S., had been used for rheumatoid arthritis for several years during which the added benefit of clearing psoriasis was thoroughly studied and verified through directed trials.

The advent of Enbrel, followed quickly by Amevive, Raptiva, Humira, Remicade and others in the pipeline or being prescribed “off label,” took over the excitement we were losing as the realities of gene therapy sunk in.  I was one of those few thousands of people who jumped quickly onto the Enbrel bandwagon only to find the manufacturer ill-prepared to deliver.  We were wait-listed for over a year (some of us) while new manufacturing facilities were readied.  Then, in my case, this particular biologic didn’t work.

In retrospect, I understand my flirtation with Enbrel was mismanaged.  I started at a dosage that was too low to overcome a rebound from cyclosporine and it wasn’t until four months into my use of Enbrel that my doctors approved me for twice the initially recommended dosage.  During that time — between starting on Enbrel and being allowed to increase the dosage — I was diagnosed with testicular cancer, went through surgery and radiation therapy, and had to “suspend” my use of Enbrel altogether for two periods of several weeks each.  By the six-month mark on the Enbrel, I was flaring badly and ended up returning to one of the oral systemics and giving up the Enbrel.  Despite all this I have returned Enbrel to my list of potential future therapies.  It deserves another try, under less stressed circumstances, primarily because it is one of only two subcutaneously injected biologics currently showing equally good results for skin psoriasis and psoriatic arthritis.  (The other SQ-administered biologic that seems to help both forms of psoriasis is Humira, which I am currently using with excellent results.)

These new brightly lit drugs for psoriasis are outrageously expensive.  The “medicine” consists of long protein molecules naturally produced by living tissue (under stringent laboratory conditions, of course). The reason biologics can’t be delivered as a pill or capsule is that the process of digestion would break down the molecules that need to stay whole to work.  Therefore, the current crop of biologics for psoriasis are either infused or injected. This means the medicine either comes with the paraphernalia necessary to administer it, or one must obtain an infusion under medical supervision. While this adds to the expense, I rather doubt it adds that much. The biologics are simply more difficult to manufacture, package and transport than pills, and enormous investments in research, development, and studies towards FDA approval all contribute to the high cost, which typically runs between $1,000 and $2,000 per month.

I hope we are in a period where the newness of biologics for psoriasis buoys their high prices. For the time being, the manufacturers are not threatened by deadlines on their exclusivity agreements with the FDA — but that, I read, is being challenged in Congress, now.  As the number of biologics grows, competition will exert some pressure; however, perhaps not as much as we would think.  Most of the bouncing from biologic to biologic that I and other well-insured flakers have tried has been motivated by drug performance, not price.  Enbrel didn’t work for me ... Raptiva worked splendidly on my skin but had no effect on my psoriatic arthritic joints ... I tested “inappropriate” for Amevive ... and now I’m very happily using Humira with no intent to switch again until symptoms return.  Every now and then I hear that the psoriasis biologics are in a “shake out” period.  That implies some will rise to the top of the heap because they are better drugs, others will fall out of favor because they don’t perform well.  Frankly, I don’t think the case for or against any drug can be reduced to market forces.  Our various equations that add up to P — being so diverse and changeable over time and environmental circumstances — are more of a factor, I believe, than sales statistics and marketing strategies.  What we are seeing in the postings at PsorChat and other P-boards, blogs and so forth, is the mantra “different strokes for different folks” applying to the biologics as well as all other types of P-drugs and treatments.

I remember attending the Raptiva road show in October 2004, and hearing the keynote derm repeat, with emphasis, the life-time nature of biologic treatment for psoriasis.  I was already a lifetime user of insulin, so the thought of another routinely self-administered shot seemed a simple price to pay for living flake-free.  The “life-time” efficacy of a single biologic therapy does not appear, in practice, to be so assured.  Like virtually all P-therapies, on-going efficacy appears to be subject to the same individual “formula” that includes time and environment. My inbox at FlakeHQ is receiving an increasing number of emails from people reporting their biologic has stopped working.

I’m no economist, but it seems to me a fluctuating population of users for any particular biologic may work counter to our hoped-for price decreases.  I don’t believe any of the biologics have received the prescription levels for psoriasis they had targeted. (Some have fallen far shorter than others.) There are lots of reasons for this, of course, but cost is certainly a factor. This means, to me at least, that holding one’s breath for lower prices is not a good idea.

Interestingly, the uninsured and underinsured who are left outside the range of biologic therapies have managed to revitalize interest in alternative therapies for treating psoriasis. This has been a very perceptible trend at FlakeHQ.com.  Diets, dietary supplements, acupuncture and acupressure, Ayruvedic medicine, chiropractics, climatotherapy — all of these alternatives dwell constantly along the sidelines of psoriasis discussion and it should come as no surprise that when traditional western medicine “exceeds our grasp” — or when it fails — what was fringe may take center stage.  There is a persistent disdain for this fringe group, partly well founded, but not entirely.

I believe in my theory that psoriasis is the end result of a biological/temporal/environmental equation that individualizes in all of us who flake (most of this chapter in its original form was intended to defend this point of view).  To the extent that there are specific biological actions, attributes, or conditions that are common, therapies and products that focus on those commonalities may help large numbers of us. Nothing has proved to help all of us! None of those alternatives I listed in the preceding paragraph should be dismissed if you hold my point of view.  They may be difficult to test and hence defend, they may influence flaking roundaboutly, and like everything else, they are not likely to work for everyone. But I regularly hear from people who are helped by these alternatives.  Often the correspondence progresses like this.  “I am going to try ___. Wish me luck!”  “...so far, nothing...”  “I’m seeing improvement!”  “Still improving (or) staying improved.”  “It stopped working....”  But I receive that same progression of email from folks who try biologics, other systemics, and virtually every prescription topical.  

All this makes me sound extraordinarily tolerant of the pharmacological circus and its side shows. I do think that tolerance is indicated in the treatment of psoriasis, but I do not go entirely without rages.  While it may be difficult, possessing my point of view, to point to any concoction offered as a fixative for psoriasis and call it “snake oil,” it is not impossible if you set limits on what is or isn’t acceptable presentation.

Psoriasis Fixatives and Snake Oil

Anything today pitched as a “cure for psoriasis” is being unacceptably presented. There are “effective treatments” that “control symptoms” but they are not cures. Sometimes I think the authors of “cure” claims are simply misusing the word.  It’s almost funny to come across a headline with the word “cure” then find, further down in the narrative, a statement like “80% of those who try this see improvement in their psoriasis.”  I have, in the past been told it’s me that’s misusing the word “cure.”  One correspondent pointed out that not long ago people said they were going somewhere to “take the cure” for this, that, or the other and everyone understood this did NOT imply a one-time-only visit. I shrug.  When I read an ad for a “psoriasis cure” I flinch because I know it’s going to be relatively expensive and it may or may NOT help me, and even if it DOES help me, it almost certainly won’t help me FOREVER.  If, on the other hand, I read an ad that says “effective at reducing or eliminating psoriasis lesions...” my blood doesn’t boil and my mind doesn’t rage.

Any product marketing that denigrates alternatives is unacceptably presented.  One of the reasons why I like John O.A. Pagano (chiropractor and author of Healing Psoriasis: The Natural Alternative) is that, while he doesn’t like some of the systemic medicines used to treat psoriasis, he does not proselytize against them.  He wrote to me, “If I had the problem [psoriasis] I would do all I could to find answers (within reason).  If some procedure were presented to me that sounded promising, I would go for it.  I would soon know, however, if it is right for me.  If it is, I'd stick to it — if not, I'd move on!” Every moderate to severe psoriatic who has assumed responsibility for his own treatments understands completely Dr. Pagano’s sentiment in that quotation — whether or not they agree with his dietary approach to “healing psoriasis.”

Any product marketing that does not include the names of the active ingredient(s) is unacceptably presented. There are so few active ingredients allowed and/or known to improve psoriasis that snake oil advertisers have difficulty with this.  Many will mention the ingredient (especially if it is commonly known to work; e.g., zinc) but then suggest their version of it works better than all the others because of additional “secret” ingredients.  If telling me what those additional ingredients are is giving away the store, there should be no store, no product, no promotion. I should also say, there should be “no booklet.”

Over the past dozen years I’ve come across two or three examples of snake oil salespeople trying to beat objections by selling “recipes” instead of “product.” They do it through booklets for which you may pay between $10 and $30.  It’s so transparent! You can almost see their greedy little minds gyrating....  “Hmmm.  If I package this all up and sell it as a product I don’t dare list the ingredients because everyone will recognize it as being readily available elsewhere/already/in raw form....”  “Okay, I’ll write a booklet.  Tell them how to make it themselves....” Then, of course, the ingredients list becomes something you pay for in and of itself.  Wow.  The amazing thing is this hypester is likely to make several thousand dollars before word gets out. (One person of this ilk turned down my offer to review his booklet when I said I would neither purchase a copy nor sign an agreement not to disclose his “secrets.” He may have beat ol’Ed Dewke at FlakeHQ, but his “secrets” were learned and released by other third parties, thereby saving perhaps thousands of flakers from throwing away their money.)

The last and most difficult kind of cure/remedy/palliative product sales is that which comes from the truly heartfelt but poorly informed.  Over a decade ago, I heard from a gentleman, at the time in his sixties, who had spent many years in prison.  While he was incarcerated his wife developed and suffered terribly from psoriasis.  He made it his occupation, while in prison, to develop a cure for his wife.  He read what he could get his hands on and learned enough to know petroleum jelly was a good emollient and there ought to be something you can add to it that would complete the healing of psoriasis lesions.  He claimed he worked for many years on his "jelly," at first giving instructions to his wife when she visited as to what to add and how to make the next batch.  Their experimentation continued when he was paroled and finally he hit upon a combination that worked.  He claimed his concoction made the lesions disappear for quite a while.  And, if used when the first signs of them returned, it would quickly thwart them again.  He begged my permission to send me a sample jar to try for myself.  I gave my permission, received his jar quickly and — it still surprises me to reflect upon this — I used it as directed until the jar was almost gone and I realized it had done nothing except keep me from using other things that did work.  My trial with his product resulted in the same worsening of my lesions I would have expected if I just stopped treating them altogether.  Ironically, on or close to the same day I tossed the homemade remedy and resumed my use of prescribed topical corticosteroids, I received an email from my anxious entrepreneur.  He wondered how I was doing and if I planned to write positive things about his "jelly."  Rather than letting my rage abate overnight, I fired back at him full blast then immediately regretted it.  But what really left me aghast was his response to my angry email.  He wrote back that he was sorry I had not improved but he rather suspected I wouldn't because, in making the batch from which he extracted my sample, he had forgotten a key ingredient.  Would I mind trying another jar that he was sure would have all the proper ingredients?

Sigh.

Contents of Flake: Confessions...

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©2008 Ed Dewke