Part 2 — March-April, 2004
March 9, 2004 - Arthritis
March 12, 2004 - T-cells
still compromised, Soriatane on my horizon
March 17, 2004 - First dose of Soriatane
March 25, 2004
- First Soriatane side effects
March 28, 2004
My grisly foot
April 12, 2004
- Soriatane needs help
April 23, 2004
- Long ways from "cured"
April 30, 2004
- The jury is still out
March 9, 2004
The miraculous improvement in the
psoriatic arthritis in my right knee didn’t last long.
The Monday after my outing with the granddaughters was thrilling,
Tuesday was good, too, but by Wednesday the PA had forgotten about
whatever happened to appease it. By
Thursday I was hobbling around as though the reprieve had never occurred.
The one good thing about the
experience was switching from Tylenol/Ultram to ibuprofen.
Now, two weeks later, the ibuprofen still quells the pain better
than the Tylenol/Ultram had.
I had mentioned some time ago
that the switch from clobetasol propionate to betamethasone dipropionate
had improved my lesions. In a
way, that remains the same. They
are less inflamed — pink instead of red — but they are still flaking.
I also think the growth of the lesions (from dots to islands to
continents) has been temporarily interrupted.
I’m about 20 grams into the betamethasone, so it’s entirely
possible I’m still enjoying the “shock” of this “new” topical on
The only lesions that have
worsened over the last couple of weeks are those on my hands and fingers.
They, too, are less red, but they have grown, they flake, and they
crack. The skin has become so
thick on my fingers that it feels like I’m wearing gloves.
If I curl and squeeze my fingers into fists I can actually watch
the skin crack in places (I don’t do this often).
March 12, 2004
compromised, Soriatane on my horizon
My CD+4 count continues to rise
but at a snail’s pace. I’m
now 181, less than 20 points better than a month ago.
At this rate it will be a year before I return to the bottom of the
normal range (450), so those vitamins my GP told me to take better be
I must do something about this
rebound and it’s obvious from my blood tests I won’t be trying another
biologic any time soon.
I’ve probably got another
week’s worth of betamethasone dipropionate, then I return to the
clobetasol propionate. So far
the betamethasone has been keeping the lesions pink and the flaking
reduced but not altogether stopped. The
appearance of new lesions seems to be slowing on my legs and arms.
This is not true for my hands, though.
The lesions are spreading now over the backsides of my palms and on
my inner wrists. The fingers
on my right hand have wrap-around
lesions up to the second knuckle from the nail (first knuckle for the
thumb). On my left hand there
are solid lesions up to the first knuckle from the nail, then spotty
lesions further up on three of the four digits.
I’m growing more lesions on my
back and buttocks, too, but these are hard to discover and hard to track.
Some are impossible to goop up.
Thankfully, most of these never itch — the exception being
lesions on my butt, which will sometimes itch fiercely.
As far as the psoriatic arthritis
goes, it remains prominent only in the right knee.
(It’s very visible as swelling on the pinky finger of my left
hand, but that doesn’t hurt unless I squeeze it.)
The only time my right knee is not
uncomfortable is when I’m sleeping.
All the rest of the time it radiates one or both of two kinds of
discomfort: the first is the
typical arthritic ache which is
just a notch above the discomfort of a stiff joint.
It makes you want to bend the knee because this ache feels like it
could be “worked out.” The
second kind is a prickly pain deep in the knee.
It’s difficult to describe. Perhaps
the best analogy is a bunch tiny needles pricking you, then stopping, then
pricking again, sometimes very quickly, sometimes slower.
Either the ache or the prickly pain is constant when I’m awake.
Sometimes the ache can be relieved by elevation, wrapping, heating
or — the most drastic — hypodermic aspiration (sucking the fluid off
the joint with a big syringe) — but all of these provide temporary
relief, at best. The very
worst arthritic pain comes when the joint is stressed.
If it’s a traumatic stress the pain is instant and dramatic.
Some accident that would hurt a normal knee is only exacerbated if
the knee is arthritic. If its
an accumulated stress (over-exercising) the stress pain will come later,
sometimes building gradually and fading gradually.
It’s time to try Soriatane.
Nothing I’ve read suggests Soriatane will help the psoriatic arthritis.
But it’s the last systemic medicine I haven’t tried for the skin P,
and I’m sure it will be another 6-10 months before my derm will consider
allowing me to take more methotrexate or cyclosporine.
Before I call my derm I’m going
to review all the correspondence at FlakeHQ about Soriatane (a.k.a.
acitretin ... there’s a long evening of reading) and do some more web
March 17, 2004
First dose of Soriatane.
March 25, 2004
Well, if I can believe what I’m
seeing, my rebound has stopped and my lesions are improving.
I’ve moved back to the
clobetasol propionate for once-a-day gooping, but the changes in lesions
are different than I’ve ever seen come about from topicals, so it must
be the Soriatane. One
other piece of evidence suggests this:
A common early side effect of Soriatane is peeling palms on hands
and feet. Check this out...
This picture was taken this
morning. My hands and feet
have been this way for about a week now.
(My grandchildren are pretending I have a contagious flesh-eating
virus. This has curbed the
hugs to which I’ve grown accustomed.)
I find this rapid change
flabbergasting. Backing up a
little, I noticed the lesions thinning (growing flatter) and the redness
lightening (turning pink) as early as Friday of last week — after only 3
doses of Soriatane. Nothing
I’ve taken — including methotrexate and cyclosporine — has worked
this fast. But I have to keep
reminding myself, Don’t drown in
paroxysms of joy, Ed! If
this were it, if where I’m at right now is the best I’m going to get
on Soriatane, it will be unsatisfactory.
When I picked up the prescription
last week I asked my pharmacist what I’d be paying for it if I didn’t
have insurance (my co-pay was $25, which is the highest).
She said, “$400 for a month’s worth.
Thirty capsules.” I
was startled but not shocked. Consider
the Enbrel I tried last year: $1,200
a month for the regular dose, $2,400 a month for the double dose.
And Enbrel didn’t work for me.
Years ago, before I tried any of
the systemics, this time of year would have meant a flare-up for me.
The change of season from Winter to Spring and then, again, the
change from Fall to Winter, had always brought on a P flare.
This is one of the reasons why I’ve always had a hard time
accepting the argument that P has nothing to do with allergies.
I grew up allergic to all sorts of things, but hay fever was at the
top of the list. Budding
plants and falling leaves did a number on my sinuses.
When, at 39, I started to flake, it was Springtime in the high
desert of Colorado. All the
fruit orchards of Grand Junction, Colorado, were in full bloom and so was
my hay fever.
Throughout the 90s my allergies
and my P waxed and waned on the same climate-tuned schedule.
Right now my sinuses are a mess, yet my P rebound seems to be
subsiding. To what else but
the Soriatane can this be attributed?
I keep my fingers crossed and a
piece of knocking wood within reach.
March 28, 2004
It would be convenient to blame
this foot on Soriatane, but I think the drug is only partly to blame.
This foot has P lesions on it.
In fact, at this stage it’s damned near all one big lesion.
The yellowish thickened skin is the fast-growing stuff, suggestive
of plaque P. It either
thickens and turns into calluses, or it loosens and begins to feel like a
leather sock. The thickened
stuff is on the balls of my toes. The
loosened stuff is in the arch. Some
of this I’ve peeled manually, but whether I do this or not, every
evening when I remove my sock it is full of scale.
Clara informed me the other day
that at night, if I happen to touch her leg with the bottom of this foot,
it invariable wakes her and “sends her through the roof.”
I’ve checked the ceiling in the bedroom and she’s exaggerating
about that second part.
I think there continues to be a
thinning of plaque lesions generally and continued lightening of the color
of the lesions. However, I do
notice that my largely in-door existence tends to fool me about the color
of the lesions. When I do get
out under the sun, the lesions on my hands appear much more pronounced —
And I must qualify my
enthusiastic claim of all-‘round improvement.
I noticed yesterday that the scalp P and ear P appear to be worse.
April 12, 2004
While coddling a baby and
watching older grandchildren hunt Easter eggs hidden rather poorly in my
back yard yesterday, I noticed for the first time that my lips were
peeling. Soriatane side effect
number two. But I’m getting
ahead of myself.
I’ve almost finished my fourth
week on Soriatane and the really exciting news is that signs of healthy
new fingernails are peeking from beneath my cuticles.
There is a chance that by my West Coast trip at the end of July I
may have nearly normal fingernails!
No skin lesions have disappeared,
but they have all become different under the Soriatane.
Two weeks ago the color had already changed from crimson to salmon,
and they had become thinner, but they still tended to scale about the same
as before. Now, however, while
the color is still salmon, the scaling has changed completely.
You can’t really call it scale anymore.
Now it is peeling.
Just like my lips, my palms, the bottoms of my feet:
Thin slivers of skin that peel off by rubbing.
(The “slivers” are decidedly thicker on the soles of my feet,
and they don’t come off so easily.)
A little over a week ago I
stopped using high-potency topical corticosteroids and started applying
hydrocortisone valerate to the lesions once daily.
This is a mild topical, prescribed for use on face and groin where
the skin is thinnest (also sold as Westcort Cream).
I use it on other lesions when I believe they are subsiding.
This time it didn’t work. Evidently
Soriatane does appreciate all the help it can get.
With me, the help came as high-potency topicals (betamethasone
dipropionate and clobetasol propionate).
When I stopped using those, Soriatane was no longer up to the task.
My lesions enjoyed about a week’s worth of fresh rebound.
But I wasn’t about to give them
more celebration than that, so I refilled my prescripts for the higher
potency topicals and have, for several days now, been gooping away with
clobetasol. Already the
lesions are withdrawing again. Back
to salmon colored — and now the “peeling.”
This shouldn’t surprise me —
that Soriatane requires help to work well, at least initially.
I’ve read that many people use light therapy for the assist.
Light therapy seems to be something my skin won’t endure, so I
will stick with the goop.
Something associated with this
new “peeling” that’s replaced my typical flaking is a pervasive,
all-over itch. I have this back scratcher — I’ve had it for years —
and in the last few days I believe I’ve nearly worn it out.
There doesn’t seem to be an inch on the surface of me that
doesn’t itch. I can’t
write about it anymore because it’s only making it worse....
I just located a note to myself
in the mess I call my desk. I
quote: “For rebound diary.
Don’t forget chills and fatigue.”
Yes, I remember now. That
was a couple of weeks ago. I’m
glad I made myself a note.
These are side effects of a
serious flare for me. I get
cold and experience chills. I
become fatigued half way through my day.
Someone mentioned on PsorChat
that these are symptoms of a compromised immune system.
P is an immune system disorder, but there are many other immune
system disorders, and I guess chills and fatigue may be symptomatic of all
(Considering the state of my own immune system, I
wonder how I manage to get out of bed at all.)
To the extent of my understanding
of the science, I am a fervent evolutionist.
My mind is constantly sensitive to situations that seem to make
sense to me from an evolutionary point of view.
That chills and fatigue are symptoms of a compromised immune system
fits this association in my thinking.
Both of these “feelings” slow us down.
When we are slowed down (or slumbering, which is the goal of
fatigue) we are less likely to get ourselves into situations that will
challenge our immune system. Less likely to be wounded. Less likely to
encounter infection. As I well
know, it takes time for an immune system to right itself.
Chills and fatigue must be nature’s way of making us give
ourselves the time to get well. We
are at that stage in our own evolution as life forms that we can consider
this, but our consideration is irrelevant.
Whether or not we had the capacity to think about it, the chills
and fatigue would help ensure our survival.
I find that thought comforting.
April 23, 2004
Long ways from
Am now in week 6 on the
Soriatane. The only thing
that’s “irrefutably evident” is that my rebound flare has been
stopped. I’m by no means in
remission, but everything has settled down.
This is what it feels like to have widespread psoriasis on a
Flaking remains a significant
problem on my scalp and in my ears. As
I type this I’m letting Neutrogena T-Gel shampoo dry on my scalp, in
half an hour or so I’ll jump in the shower and wash it out.
Then, before I comb it and let it dry naturally, I’ll apply Olux
Foam (clobetasol propionate) and hopefully it will get better.
Though the scalp scaling has been bad, it’s not been bad enough
to compel me to use overnight occlusion.
(For one thing, the “scalp cocktail” in my medicine cabinet,
which is compounded to be occluded over night, is probably four years old.
I’m afraid to even open the jar.)
For the ears I apply the
fluocinonide solution when I can remember to.
Often I don’t remember my ears (because they’re not itching)
until I’m somewhere else. I
noticed yesterday the scale buildup on the outer ear is getting bad.
Almost all the body lesions have
stopped scaling. Those that
itch and get scratched still scale. I
was told long ago, and have built up plenty of evidence of my own to
support it, that no medicine will get rid of a lesion that’s regularly
scratched (i.e., abused). This
is why I’ve always hollered that handling the itch is the first step
towards any effective regimen.
Most of the healing lesions
turned salmon colored a few weeks ago.
That’s as good as they’ve gotten.
Some days they look red again.
It’s as though the Soriatane, coupled with the topicals that I
still use every day, have reached an impasse against the Beast.
Neither side can make headway.
It’s a parry in one direction followed immediately by a parry in
All of which brings back many
memories. None of this is new.
Well, one part of it is new — the $400-per-month bottle of
As far as I am concerned, I’m
at the halfway point in my Soriatane trial.
If I were in complete remission right now I’d be surprised.
Even my old standbys, cyclosporine and methotrexate, wouldn’t
have me cleared in a mere 6 weeks. So
I must be patient.
Next week I’ll close out the
Rebound Diary in order to get it posted at FlakeHQ in May.
That means the Soriatane story won’t be over.
I’ll know by the July-August update if Soriatane and I are going
to get along for the long run.
April 30, 2004
The jury is
This is to be my last entry in my
rebound diary for 2004. I’m
in the middle of week 7 on Soriatane and experiencing little difference
over week 6 (last entry). Time to summarize:
It was never my or my derm’s
intention to start me on Soriatane when, last December, I began the
cyclosporine weaning process. I’d
been enjoying a remission on cyclosporine for several months after my
dismally failed attempts to get any improvement on Enbrel for the first
six months of 2003. No, the
intention was to start an Amevive course in January. To do so I wanted to
be relatively clear of lesions but taking no other systemic — which is
why we started tapering off the cyclo before the end of the year.
But over the December holidays my
rebound started, so I knew I would not be clear for my Amevive start-up.
Then we learned there could be no Amevive start-up when preliminary
blood tests in January revealed extremely depressed CD+4 activity in my
lymphocyte cells (T-cell variety). This
is the type of white blood cell whose activity is affected by Amevive to
slow or stop P lesions. My levels were dangerously low (at the point, in
fact, at which HIV victims become full-blown AIDS victims). My health care
providers shifted their concerns from starting me on Amevive (now out of
the question) to recovering my immune system.
Furthermore, the logical question of whether Amevive would have any
effect on my skin P seemed to be answered in advance by this circumstance.
If Amevive was supposed to quell P lesions by suppressing CD+4 activity, and I was experiencing a P rebound without having
near-normal quantities of CD+4 in my system, why should we expect Amevive
to have any affect on my P? If
my entire immune system — including the full family of T-cells — was
compromised, this might have been why Enbrel hadn’t worked for me in
early 2003. One suspected
contributing factor to my abnormally low levels was a therapeutic
radiation regimen I went through in 2003 at the same time I was on Enbrel.
We’ll probably never know — because the appropriate blood tests
weren’t performed at the time — but the radiation may have knocked out
enough white blood cells to explain the persisting low T-cell activity
counts. Regardless of the lack
of reliable evidence over 2003, I harbor a strong suspicion that my
P is not primarily driven by T-cell activity.
Enbrel probably didn’t work because the stuff it was trying to
suppress was already severely suppressed in my system.
Yet I flaked. We knew
in advance specifically what Amevive was going to suppress and that I had
so little of it Amevive would probably have been dangerous or, at the
least, superfluous. Yet I
So, me and the biologics had to
part ways at the beginning of 2004. And
there I was, rebounding mightily, every waking hour forgetting a little
more of what life with normal skin is like.
The only thing left to try was
Soriatane. In March I started
taking it. In the very first
week I knew something was going on. Lesions
were thinning and becoming less inflamed.
In fact, it seemed to be working faster than any other drug.
Soriatane’s side effects are
what most users like to talk about (read correspondence in FlakeHQ).
For some they are horrendous. The
most common are:
- peeling palms and soles of feet
- severely chapped lips
- hair loss
Less common things include liver
anomalies and severe joint pain.
For women of child bearing age,
the absolute worst thing about Soriatane is that it causes birth defects.
As a result, the drug is simply a no-no for women intending to have
babies within a few years of taking the drug.
Despite this list of side
effects, Soriatane is considered one of the safest systemic drugs for P
because it has the least effect on liver or kidney function.
All the common side effects are supposed to be temporary (mostly
overcome in the first 12 weeks of administration) and thereafter, if
Soriatane is working to the patient’s satisfaction, unlimited
continuance is supposed to be tolerated better than long-term use of
either methotrexate or cyclosporine. (Both
these others become toxic over time. Methotrexate
[MTX] causes liver damage; cyclosporine causes kidney and/or liver
damage.) As with all systemic
drugs for P (so far) periodic and specific blood tests are recommended to
ensure the drug is not adversely affecting anything.
At 7 weeks I’m far from
satisfied with the results brought about by Soriatane so far.
I’m pleased by the progress, but if things don’t continue to
improve I won’t be happy. But
I am optimistic. I said at the
onset I would give Soriatane 12 weeks before I determine if I continue
taking it or not. That
deadline is 5 weeks away. A
lot happened in my first 5 weeks on Soriatane.
It wouldn’t take that much more to make me happy by the end of
week 12. So I keep my fingers
This diary started out as a way
to keep track of my worsening P. Almost
every moderate to severe flaker experiences rebounds, often brought on by
stopping or switching medications, but also brought on by other things
including trauma and climate. I define “rebound” as a rapid worsening
of P. P normally waxes and
wanes and every time it’s in the “waxing” stage I wouldn’t call it
a rebound. I limit my use
of the term to those occasions when every morning you can tell your P is
worse; where, in a week’s time, lesion activity becomes shockingly
What happens to your skin is only
part of it. And, if you have
P-arthritis, even joint pain rebound is only part of it.
The worst of it is psychological and social.
I don’t think any human being could go through it without
depression and stigma. In
other contexts I’ve referred to rebounds as “the Job effect.”
(In reference to the Biblical character whom God and Satan decided
to make the subject of a gruesome bet.)
In this diary I’ve recorded
some of the aspects of a rebound that I had forgotten.
I didn’t record them all. While the diary was in progress I took
some time, one evening, to re-read the entire “Don’t Say This”
collection at FlakeHQ. Reading
that list from the bottom up convinced me that many of the anecdotes
recorded there came from people who were rebounding when those things were
said. Most of us are never
more sensitive and stigmatized about our P than when we are rebounding.
The last time I had a rebound I
had four grandchildren, all under the age of 6.
Now I’ve got 7 grandchildren, four over
the age of 6. I’ve learned I
can gauge the influence of my P
condition on those around me by paying attention to the reactions it
engenders from these older grandkids.
Kids over the age of 6 tend to notice the same things adults do,
but they are considerably more prone to blurt out their reactions to
whatever it is they see. Propriety
is not a child’s strong suit. These
older kids have all noticed my P in a big way since the onset of the
rebound. Most of what they
blurt is intended to tease me and I take it all in that way:
“Papa, you still have that flesh-eating virus on your hands.”
“Well then,” I’ll retort, “You probably wouldn’t want me
to ... squeeze your knee!” which is exactly what I lunge to do at that
second — and they squeal with delight, not fear.
But they noticed not because they were looking for something to
tease me about, but because they could not help but notice.
Others are like that, too. And
we know they are noticing whether or not anything is said.
Eventually, before my rebound
could play through its natural course, I caved in and said “yes” to
Soriatane. I’ll never know,
now, how long my rebound would have lasted, just how bad it would have
become. That’s all right.
My inclination towards inquiry, my thirst for knowledge, does not
require living completely through a rebound au
naturel to be satisfied. I’ve
lived with P long enough to say, without excuse, “let’s try to fix it
— as soon as possible.” In
that, I’m sure, I’m not alone. -Ed
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