Postscript: Systemics, Specialization,
Biologics and the Insurance Dilemma
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.
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
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).
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.
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
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?"
Ed's Postscript (3/6/2008): Systemics, Specialization, Biologics and the
By the time I
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
I was also seeing a
rheumatologist for the first time when I made the MTX
decision. She, independent of my dermatologist, also
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
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
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
When I read the entry on
Wikipedia, and then link to its companion page
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
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."