Flake Confessions - 6 - Psoriatic Arthritis & Systemics...

Chapter Six
Psoriatic Arthritis
2008 Postscript: Systemics, Specialization, Biologics and the Insurance Dilemma

Psoriatic arthritis introduced itself to my right knee in 1992. It was probably triggered because, at the ripe young age of forty-one, I was exercising regularly for the first time. I got up at 5:00 every weekday morning and, weather permitting, drove to a nearby mall. There, in the dark, I put on my in‑line skates and did laps around the parking lot — five, ten miles or so, every day.

Now, in‑line skating is supposed to be much easier on the knees than jogging, and that makes perfect sense. In‑line skating is like ice skating, you glide along and enjoy the feeling of your muscles meeting very little resistance from your environment. However, when you in‑line skate, you fall. That's how you learn to do it. You scoot, you fall, you get up, you scoot until you fall again and, hopefully, eventually, you can scoot for weeks or months between falls. But falling is inevitable and every in‑line skater knows it. I think the falling is what triggered the psoriatic arthritis.

Fool that I am, the only protective gear that I chose to wear was wrist protectors. I learned the hard way how debilitating deep bruising in the wrists can be — especially when you make your living at the keyboard every day. Why was I so cavalier as to forgo knee pads and a helmet? Well, I never fell on my head, and my knees seemed able to take the punishment. I did, in fact, learn a technique of falling that oriented most of the impact to my wrists — which were protected — and my butt — which seemed to have sufficient God-given padding. But before I learned this, my knees took quite a few good hits.

The skin over both of my knees has plaque psoriasis. These areas are two of my most troublesome in that they rarely acquiesce (probably because they're so easy to itch while I'm sitting by myself). My derm just shrugs when I ask him if psoriatic arthritis is linked to lesions on the surface of the affected area. Perhaps he doesn't know. According to National Psoriasis Foundation literature, sometimes psoriatic arthritis can manifest where and when there are no surface lesions active. I wouldn't be a very good test case, because literally every joint in my body is covered by psoriatic skin, yet only the right knee (knock on wood) has manifested psoriatic arthritis.

The arthritis came gradually, over the course of many weeks. Aside from the in‑line skating, I'm a pretty sedentary individual, so it's easy for me to reflect back and remember the exact behaviors that made me aware of the problem. The first was walking down steps (I live in a two story townhouse). The second was cleaning the cat's litter box (stooping).

I noticed, first, annoying pain in my right knee that made me favor it when I traveled downstairs (it didn't seem to bother me climbing upstairs). Within a matter of a week or two, the pain became acute — I literally had to hobble down the stairs with my weight resting on the banister. At the time, I blamed this on my most recent fall while in‑line skating and determined to just lay‑off the skating until things got back to normal.

The pain became excruciating when I stooped to scoop out the cat's litter box. Eventually I simply couldn't do it; had to bend my left knee with my right leg stuck out behind me like a ballerina and pick the litter box up to tend to it (that's fun).

Within another couple of weeks just sitting for a few hours at the computer would inspire my right knee to start throbbing. I'd have to get up, walk around a bit — which hurt, too, but evidently loosened something — so I could resume my work at the computer.

It so happens I was flaming pretty broadly at this time, so I went to my National Psoriasis Foundation literature and studied up on psoriatic arthritis. Meanwhile I visited the pharmacy and bought a couple of over‑the‑counter pain remedies for standard "arthritis." These did help.

My derm has assumed a "let's wait and see" attitude about my arthritis. "If it persists, we'll send you to a rheumatologist," he said. So far, the over‑the‑counter arthritis pain‑killers have done well enough to compel me not to add yet another doctor to my stable of (expensive) healers. But that the knee pain is associated with the psoriasis is something I would bet on. The pain waxes and wanes just as the lesions do; not always in sync with the lesions — evidently responding to different triggers — but at about the same rhythm. Furthermore, I have no family history that would suggest this is "regular" arthritis. Yes, there are arthritics on both sides of my family, but none who had problems at my age. I do have elderly relatives with osteoarthritis, but it's not been a problem for anyone in my family under their mid-fifties. However, it all does make me wonder what's in store for me.

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It was winter in Lexington, Kentucky, and my P-arthritic knee was at its worst. I was limping like a cripple, wincing with every step. I had visitors from out of town, an old Coast Guard buddy of mine, his wife and two daughters. We were downtown, in the historic district, doing the "shops and bistros" thing. I was limping along, trying to keep up.

The girls spied an old fashion soda fountain and bawled to go in. I bawled to go in, too. Taking a moment on a high, round, swiveling stool appealed to me.

Once our sodas had been ordered, everyone settled comfortably at the counter, my buddy, who was sitting next to me, asked, "What's wrong with your leg?"

"Psoriatic arthritis," I said.

His retort: "They shoot horses with that, don't they?"

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Ed's Postscript (3/6/2008): Systemics, Specialization, Biologics and the Insurance Dilemma

By the time I tried methotrexate in 1999, my P-arthritis had attacked BOTH knees, wrists, fingers and toes. It was the combination of debilitating P-arthritis and increasing resistance to topical steroids for my skin lesions that prompted my decision to try methotrexate (MTX). I'd been "on the wagon" for a couple of years and a normal liver enzyme test fortified my MTX decision.

I was also seeing a rheumatologist for the first time when I made the MTX decision. She, independent of my dermatologist, also recommended MTX.

Methotrexate was invented in the 1940s as a synthetic anti-folate (blocking the metabolism of folic acid in the body). First studied using children with leukemia, methotrexate became the first chemotherapy drug approved by the FDA in 1953. Over time, its palliative effect on a number of autoimmune diseases — including psoriasis and psoriatic arthritis — were discovered, studied, and approved by the FDA to use for these additional diseases. There is a scary list of adverse reactions associated with MTX including, but not limited to, liver damage. It should not be used by pregnant women, or men and women attempting to become pregnant. The most hideous adverse reactions from MTX usually happen (when they happen at all) to cancer patients taking extremely large doses. In comparison, the prescribed dose for psoriatics is very small. Monthly, bimonthly, or quarterly blood tests are administered to detect any change in liver function. While some dermatologists won't let their patients remain on MTX indefinitely, others do. I have corresponded with people through FlakeHQ that have been on MTX continuously as long as 14 years.

MTX, the first time I used it, nearly cleared my skin and obliterated the P-arthritis; but this blessed relief lasted only 8 months. I expected my derm to up the dosage of MTX, but instead he switched me to cyclosporine (another systemic). In the period between 2000 and 2003, I was on MTX three times, but neither the second nor the third course worked so well as the first.

That first venture into systemics in 1999 set me on a course I still pursue, which is seeking relief from both skin P and P-arthritis through the use of systemic medicines. I haven't used MTX again since 2003, but I have used cyclosporine after periods of using biologics that either didn't work, didn't work well, or lost effectiveness.

Two things about my post-2000 systemics experimentation warrant further comment. The first has to do with medical specialization and the second with costs.

At first, my rheumatologist (a woman) deferred completely to my dermatologist (a man) on matters of medicines that affected both skin and joints. (I was, after all, referred to her by him.) However, when MTX started working poorly for me, and my useful periods on cyclosporine were becoming shorter because of adverse reactions, both doctors started to talk to me about the new biologics. Enbrel was coming. I signed up. Unfortunately, I had to wait a year (along with a few thousand others) while a new manufacturing plant for Enbrel was turned on in the eastern U.S. And then, Enbrel improved my P-arthritis somewhat but did nothing for my skin. With the failed Enbrel experience behind us, suddenly the derm became quiet and the rheumy talkative. Eventually I realized this is because my rheumy had a lot more experience with biologics than my derm. (Enbrel, for example, had been an arthritis medicine for years before it was approved for P. Other biologics would soon follow the same path.)

I'm the only one I know who has had the audacity to stand up and ask, "Are dermatologists the right doctors to be treating psoriasis?" I actually did ask one dermatologist this question at a public forum (though the public wasn't very large). He didn't really answer me, but did say there was a time when "dermatology" included the treatment of syphilis — after which he grinned and I let the subject die.

My dermatologist of record for the past 16 years doesn't see me anymore. Even when I still made periodic appointments for topical refills he'd handed me off to a PA. Fortunately, I liked the PA. I think the reason I was let go by the derm is that there was nothing more he could do for me and his business was booming in the cosmetic dermatology areas. I'll always be glad I went to this fellow, because he was the first to nail the diagnosis and he wisely ushered me through the available therapies from "safest" to, eventually, "most dangerous." In other words, he cared to the extent that he could.

On the other hand, I've been seeing the same rheumy, now for nine years and I still feel I could go to her tomorrow and learn about something new to try — both for my skin P and my P-arthritis. And yet, the only thing that makes her better equipped than the derm is her length of exposure to the newer drugs. She's not an immunologist.

When I read the entry on immunology in Wikipedia, and then link to its companion page listing immunologists, I deduce immunologists are not a species of Doctor but a species of scientist. For example, the 1996 Nobel Prize in Physiology was won by so-called "immunologist" Pete Doherty, who happens to be (by education) an Australian Dr. of Veterinary Medicine. Laying that aside, he has done his prize-worthy research in the U.S. and elsewhere. WebMD.com's "physician finder" lists immunopathologist as a medical specialty. I tried finding some in the Big City of Chicago and got one name. And I found one and only one in New York City, too. When I searched for "immunopathology" in WebMD it came back Sorry, no matching documents. Google.com, on the other hand, came up with over 600,000 hits on immunopathology and it appears, from a scan of the first two pages that many of them focus on allergies. Excuse my French, but that tickles the shit out of me, as I've been claiming for years that psoriasis and allergies are NOT impossible bed fellows. Perhaps some immunopathologists (wherever they're hiding) might agree with me.

So ... Short of sitting down with a very up-to-date medical career counselor, I'm forced to think that doctors who focus on immune system diseases aren't legion. There are lots of doctors, however, who have evidently "skipped over" the big picture to focus on parts of it, like allergies or asthma (both of whom have plenty of doctors). In fact, lots of doctors have nibbled off parts of the field. Just break out the specialties from the large list of immune-system-related ailments: derms for skin, gastroenterologists for gut problems, rheumies for joints and so on and so forth. Heavens! Is it like going to a blacksmith to get your car repaired? Or, is it like going to an auto mechanic to have your horse re-shoed?

And then there's the cost. As far as I know, there isn't a biologic for psoriasis available in the U.S. that costs less than $10,000 a year. Most cost several thousand more than that and, in some cases, even more than twice that. I know some people consider this criminal, but it isn't. It's unfortunate and, hopefully, temporary. (At the moment, many if not all biologics used for psoriasis are exempt from the U.S. rule which gives them so-many years of exclusivity before generics will be allowed — in other words, their exclusivity can continue — but I've heard this is being challenged as I write this. I can't help but wonder, though, since a popular biologic costs $1,500 a month, what might a generic be able to reduce that to? $750? $500? Perhaps only $1,000. Will any of those numbers make this biologic more "available?") The high cost of biologics is like a neon sign illuminating the gap between the "haves" and the "have nots." The haves, of course, are people with insurance to cover the cost of biologics. This year (2008) there are (I've read) 47-million uninsured Americans. Among them are some flakers. And among those uninsured flakers is a sizable sub-population that would find life flake-free if they had access to biologics. In all fairness to the biologic manufacturers, I believe all of them have programs to help get their biologic into the hands of flakers who really can't afford them, and such programs are important. But do they close the gap between the haves and have-nots? I doubt it.

Please don't misunderstand; it isn't just the biologics and psoriatic arthritis that illuminate the gap between insurance haves and have-nots. For the uninsured, UVA or UVB light therapy in a derm's office can be out of reach. So can anything but, perhaps, the least expensive and least effective generic topical corticosteroids. My hero-derm, the one who finally diagnosed me and then ushered me up the ladder of treatments, said to me the day he made the diagnosis: "I hope you have drug insurance because you're destined to make some pharmacist rich over the rest of your life."

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