89 days (April 19-July 17, 2000)
by Ed Dewke
Day 1 — Wednesday, April 19, 2000
I had expected my derm to increase my weekly methotrexate
dosage. The periodic blood workups conducted throughout my 8 months on MTX
had not indicated any liver or other damage done by the MTX, and I had
remained on my starting dosage (20 mg/week). So I was surprised when my derm's
response to the returning lesions and arthritis symptoms was to switch me to
cyclosporine (in the soft gelatin capsule form by Novartis known as Neoral).
Taking cyclosporine for longer than a year is not recommended, so I think
our game plan — if the Neoral works
for me — is to bounce me back and
forth between minimum dosages of it and MTX rather than increasing the
dosages of either. Both drugs can have nasty side effects, so I can
appreciate a plan intended to keep me at minimum potential toxicity as long
as possible. Such a plan is not new. I have heard from other flakers on
My relapse while on methotrexate was gradual and
surprising in itself. I started taking MTX in June of
It had taken 12 weeks to clear over 80% of my visible psoriasis —
much of which had been with me unrelentingly for 9 years —
and slightly less than 12 weeks to reduce the swelling and stop of
the pain of psoriatic arthritis in my knees. No one ever suggested the MTX
would work forever, but I had years and years of relief in my head because of stories I had read
or heard. I guess the people who have had long-term success with MTX are
more inclined to talk about it than others, perhaps the majority, who enjoy
the benefits only briefly.
When it comes to degree of depression upon the lesions'
return, it doesn't really matter
how long the remission lasted. What matters more is the quality of the
remission experienced for however long. On MTX, for a few months my scalp P
was completely silent for the first time in a decade. My nails cleared and
looked normal for the first time in 7 or 8 years. I stopped flaking
completely and 8 out of 10 of my plaque lesions faded to invisibility or
near invisibility. My hands looked normal. The psoriatic arthritis (PA) in
my knees disappeared with the swelling; I could sit cross-legged, run behind
my grandchildren and bounce them in my lap for the first time in a year.
Save for a few incorrigible lesions on my ankles and feet, I was able to
forgo the topical unguents and potions that I have applied ritually for
nearly a decade.
It is difficult to put into words the amount of joy a
person can drink from this freedom from pain and ugliness. Matters of
attitude, belief and lifestyle that you thought you had settled into or
accepted are thrown aside with ease like tattered and out-of-style clothing.
You suddenly understand completely that this is how your were intended to
live. The years of leprous living compress in your mind to a dark and
ugly clump of time that was occupied by someone else. It is a taste,
perhaps, of that feeling we imagine we might have if our youth was restored.
You bulk up on this euphoria. It accumulates in your
system just like the perpetual pain and ugliness had accumulated there
before. This internal reservoir of joy does not explode when the pain and
ugliness returns, it deflates. It is not a balloon bursting but a tire
quietly, over night, going flat. One morning you realize the backs of your
hands are flaking again and you make a mental note to apply the goo, and
watch to see if any other lesions are reactivating, in which case you will
call the derm and ask for an increase in dosage.... And almost immediately —
the very next day, even — you
see flakes in your bed and you look closely at all your body parts in the
largest mirror you have and determine definitely it is time to boost the
dosage.... And later that day, unthinking you kneel to pick up the papers
you just dropped and the sharp familiar pain of arthritis jolts from your
Cognitively, now, you know it is back, or rather that it
had never left but has shaken off the cloak of the latest wonder drug. But
still you keep the depression at bay with hope that just
a stronger dose will bring back
It takes many days for the remembrance of pain-free
normalcy to fade and what fills up the hollow it had occupied is depression.
Depression and waiting to see if the next thing will work, will make it go
away or at least hide.
Cyclosporine is administered different than methotrexate.
I took 20 milligrams of the MTX weekly, all on one day every seven days, 10
milligrams in the morning and 10 at night. The tiny pills contained only 2.5
milligrams each, so that meant 4 pills in the morning and 4 pills at night
on the same day each week. Cyclosporine, on the other hand, is prescribed in
a weight-sensitive dosage for twice daily consumption. According to the
package literature that came with my Neoral, the recommended minimum dosage
of cyclosporine for treating psoriasis is 2.5 mg/kg/day. That is, 2.5
milligrams of drug per kilogram of body weight per day. 1 pound equals .45
kilograms, so the formula for determining recommended minimum dosage is:
((body weight in pounds X .45) X 2.5 mg =
daily minimum dosage
For me the formula works out:
((190 X .45) X 2.5 = 214 milligrams daily
I have been prescribed 200 milligrams daily, taken as one
100 mg gel capsule in the morning upon getting up and a second 100 mg gel
capsule in the evening before bed.
The Neoral package literature goes on to say that this
dosage can be increased (after four weeks, and then more on a provided
schedule) to up to 4 mg/kg/day (for me that would be 342 milligrams daily).
Cyclosporine is classified as an immunosuppressive
agent containing eleven amino acids. It is produced as a metabolite by the
fungus species Beauveria nivea. It represses the body's
tendency to reject foreign tissue and its first use was for organ transplant
recipients. Here's what the Neoral
package insert says about adverse reactions when cyclosporine is used to
The principal adverse reactions associated with the
use of cyclosporine in patients with psoriasis are renal dysfunction,
headache, hypertension, hypertriglyceridemia, hirsutism/hypertrichosis,
paresthesia or hyperesthesia, influenza-like symptoms, nausea/vomiting,
diarrhea, abdominal discomfort, lethargy and musculoskeletal or joint
In psoriasis patients treated in U.S. controlled
clinical studies within the recommended dose range, cyclosporine therapy
was discontinued in 1.0% of the patients because of hypertension and in
5.4% of the patients because of increased creatinine. In the majority of
cases, these changes were reversible after dose reduction or
discontinuation of cyclosporine.
There has been one reported death associated with the
use of cyclosporine in psoriasis. A 27 year old male developed renal
deterioration and was continued on cyclosporine. He had progressive
renal failure leading to death.
Frequency and severity of serum creatinine increases
with dose and duration of cyclosporine therapy. These elevations are
likely to become more pronounced and may result in irreversible renal
damage without dose reduction or discontinuation.
References to creatinine and renal both refer to kidney issues. In a table accompanying the text quote above,
these factors are indicated: Over one out of four patients studied (27.5%)
experienced increases in blood pressure (hypertension). Almost one out of
five patients studied (19.8%) experienced increases in creatinine levels (a
These are the reasons my derm will have lab work done on
me every other week for the first few months I'm
on cyclosporine, and why he prompted me to obtain and use frequently a home
blood pressure measurement device.
I emailed Mark Shaw in the U.K. last week to see how he
was doing. He started a cyclosporine regimen a year or so ago, but I had no
recent information. Mark emailed back saying he was only on cyclosporine a
short time before his lab work showed kidney dysfunction, so his doctor took
him off the drug. Perhaps I will have more luck.
Day 6 - Monday, April 24, 2000 - 8:00 a.m.
Yesterday (Easter Sunday) I became aware for the first
time that the lesions are beginning to improve already. This surprised me
because I wasn't expecting to see
improvement for at least 3-4 weeks. But this has occurred in less than 1
week. First I noticed the lesions on my hands, while still flaking badly,
were not as red as they were just a few days ago. They are turning to the
salmon-color that is so typical of lesions in remission. It looks odd to see
the white flakes without their bed of crimson. The plaques are thinning,
too. Prompted to explore further, I took a close look at other lesions and,
except for the ankles and feet, all the lesions are less red.
This may have more to do with my shifting from Diprolene
to Temovate as a once-daily topical. For years before I started on systemic
remedies I was using these and other topical corticosteroids. One of the
things I eventually learned about them is that they will lose effectiveness
after regular use for so many weeks, then I need to change to some other
topical. A cycle developed with either Diprolene or Temovate as the most
potent steroid used (Westcort cream being the least potent) in the cycle.
Before and during the resurgence of my P while on MTX I had been using
Diprolene on the lesions. It was time for a shift to Temovate, and I began
using it on the same day I began the cyclosporine. Improvement this quickly
is not unusual when I am starting a new topical (or a newly revisited
topical), so this may be what's at
work here, not the cyclosporine. In either case, I'm
Day 11 -Sunday, April 30, 2000
Not much to report. Everything seems to be in a holding
pattern. Most lesions are still flaky but not so red. I've
detected nothing new creeping in. No noticeable reactions to the
cyclosporine. Even the occasional twinging in the knees seems no better nor
no worse than it was 11 days ago. Rosy
reported in email published at FlakeHQ for May that, after eight weeks on
cyclosporine, "For the first time in
God knows how many years I am just about P-free." I wonder how he was
doing at 11 days into the regimen?
Day 16 - Thursday, May 4, 2000
If anything, I’ve relapsed a bit. The hand lesions are
redder than they were a few days ago. Lesions on buttocks, ankles and feet
seem to be thickening. The cyclo may be battling my typical flare-up as
weather warms. Yesterday was the first day of the year I had to turn on the
air conditioner in my garage-cum-office. And drastic change in climate
appears to be the one trigger for my P that’s irrefutable. So, here I am.
Tomorrow I return to the derm for more lab work. We’ll
see if slightly over two weeks on the cyclo have put my kidneys in a snit.
Day 22 - Wednesday, May 10, 2000
Lesions have been flattening and their crimson color
diminishing over the past 3 days. There is even an improvement (though less
pronounced) in the lesions on my feet. The only lesions that are generating
mentionable scale are those on the backs of my hands and on my buttocks.
Torso is improving the most.
Last Friday the PA seeing me at my dermatologist’s
office suggested we might increase my dosage. She said the drug rep reported
many derms were starting psoriasis patients at the maximum recommended
dosage. I'm on the minimum
recommended dosage, 2.5 mg/kg/day and the maximum recommendation is 4
mg/kg/day. I declined a dosage increase at this time. At barely two weeks
into the regimen, and recalling how long it has taken other P treatments to
work for me, I'm thinking we
should allow another two weeks on the minimum dosage before increasing it.
This makes most sense to me. Since it seems inevitable that cyclosporine
will cause liver damage given enough time and/or quantity, I'd
hate to escalate dosage before I'm
quite confident the current level is not going to work. I'll
have a better feeling for that at four weeks into the regimen. I go back to
see the PA a week from Friday.
Day 25 - Saturday, May 13, 2000
It's 5:20 a.m.
Saturday morning. Off on a 100-mile trek to the King's
Island amusement park in two hours. I need to be amused. I woke an hour ago
to peals of thunder outside and throbs of pain in my knees. Away we go ...
again. It has been a year since the psoriatic arthritis has been bad
enough to wake me.
Day 26 - Sunday, May 14, 2000
Follow up: Yesterday's
trek to King's Island amusement
park was not an agony. It was exhausting, but my knees did not hurt too bad.
By the end of the day my feet were hurting more than my knees.
This morning is a different story. I knew the moment I
swung my legs over the edge of the bed that the PA was back for real. I've
been up now for several hours and the pain is abating. Thank God. This
morning I recalled what it was like a year ago —
the pain made we remember what I'd
forgotten or blocked out. The sudden memories are not welcome. The anxiety
is palpable. My blood pressure is probably up.
Having courage to face the debilitation is entirely
different from courage to appear abnormal as a flaker.
Day 30 - Thursday, May 18, 2000
A month. The dosage is insufficient.
I had a scare on Tuesday. The derm's
office called and left a message. It was too late to call them back when I
listened to the message, so I imagined what it might be about all night.
They did the lab work over a week ago (blood and urine). If the results are
problematic I should be enraged that it has taken them this long to call. My
worst thought was that renal abnormalities were showing up already (kidney
problems) and the call was to instruct me to stop the cyclosporine. Clara
lost patience with my frustration and said,
could be just wanting to change your next appointment."
My next appointment is tomorrow.
I called them on Wednesday and a nurse was fetched.
bad cholesterol is elevated and we would like for you to watch your
consumption of fats."
"Also, your glucose was up, but
you know that."
That was it. Though relieved, I still do not understand why it took them
seven or eight days from getting the results to phoning me. Had there been
some kidney problems, would I have received a call sooner?
Fats and glucose. My diabetes is a nightmare. The diabetes
is killing me quietly; treating it effectively makes me sick. I am a dead
man walking. But then, aren't we
Day 31 - Friday, May 19, 2000
In spite of this journal, in spite of the almost lunatic
attention I pay to my P, I listened to myself updating my condition for Ms.
A___ in the derm's office this
morning and wanted to cry. I felt like a child fabricating a lie on the fly.
There is some improvement, yes. But at the same moment I look at my
hands and see lesions, thick, engorged with blood and white-capped with
scale, looking nearly as bad as I can remember them ever looking. And I
think about my feet, which are in the same shape as my hands, and remember
just a few hours ago, scratching the lesions on the insteps, showering
flakes everywhere. There is some improvement yes? Who do I think I'm
kidding? Oh yes, the situation felt better in the small of my back
when I was slathering on the steroids this morning. And what was it that
woke me at 4:30? Throbbing in my knees. To what rationalization may I
attribute that? Perhaps I should pretend I danced the night away.
When I have these flights of awareness that the moment is
full of contradiction I can lapse into sentimental blather —
spewing verbiage for the sake of buying time, I suppose —
it feels like my memories of the early days of television, when the
slate Please Stand By - Technical Difficulties was commonplace. I
launched into the story about how my quadriplegic friend thought that even
if a cure for paralysis from a severed spine was available, she'd
probably not opt for it. Not after twenty years in a wheelchair. Then,
stuttering 'round to the point,
For a few months on the methotrexate [last year] I was free of
psoriasis ... after nearly a decade of living with it every day. After that
it is very tough to experience this relapse. It makes me kind of wish it had
never gone away. And at this point for the first moment since I started
wasting our time I had the guts to look into her eyes and I saw a kind of
horrible sympathy there that I couldn't
diagnose. Was she empathizing with my despair about this relapse? Or, was
she saddened to see this man, old enough to be her father, getting
teary-eyed like a teenage jock about his acne problem? For Christ's
sake, Ed, there are patients in the oncology clinic next door learning their
cancer has returned....
It all boiled down to my willingness now, unlike two weeks
ago, to increase the cyclosporine dosage. Ms. A___ ran off to do her
calculations and I flipped through the beautiful people issue of People
magazine. Aside from some sniffles, my moment of total gushy feeling sorry
for myself, was almost over. Ms. A___ came back to tell me I'd
be adding 50 mgs a day, upping my dosage to 250 mgs.
A glitch: The pharmacy did not have the Neoral in stock.
They agreed to try to locate some, but imagined they could not have it for
me until tomorrow at the earliest. So, this meant Friday with no dosage and,
perhaps, the entire weekend. Serves me right for nearly cracking up for poor
Day 36 - Wednesday, May 24, 2000
End of last week's
episode: The pharmacy was able to get the Neoral for Saturday pickup, so I
lost only Friday's dosage.
Saturday, Sunday, Monday and Tuesday survived so far on 250 mgs daily. The
only side effect I have noticed — and
I'm not sure this is a side
effect — is extreme and unusual
tiredness in the afternoon. A two hour nap each afternoon sounds like
Nirvana (but I haven't caved into
There has been no visible improvement of the lesions. In
fact, last night I felt compelled to occlude my hands. If anything, they
were worse. I believe this can be an indicator that the cyclosporine may be
finally working. Didn't I read
that for some people the symptoms get worse just before they start to get
better? Or is this merely wishful thinking.
Day 37 - Thursday, May 25, 2000
More from the Novartis fine-print Neoral package insert:
[Psoriasis p]atients generally show some improvement
in the clinical manifestations of psoriasis in 2 weeks. Satisfactory
control and stabilization of the disease may take 12-16 weeks to
achieve. Results of a dose-titration clinical trial with Neoral indicate
that an improvement of psoriasis by 75% or more (based on PASI) was
achieved in 51% of the patients after 8 weeks and in 79% of the patients
after 12 weeks. Treatment should be discontinued if satisfactory
response cannot be achieved after 6 weeks at 4 mg/kg/day or the patient's
maximum tolerated dose. Once a patient is adequately controlled and
appears stable the dose of Neoral should be lowered, and the patient
treated with the lowest dose that maintains an adequate response (this
should not necessarily be total clearing of the patient). In clinical
trials, cyclosporine doses at the lower end of the recommended dosage
range were effective in maintaining a satisfactory response in 60% of
the patients. Doses below 2.5 mg/kg/day may also be equally effective.
I also noted upon re-reading the adverse reactions section
of the insert that "lethargy and
musculoskeletal or joint pain" are
on the list.
Why was I burrowing back into that torturous map-folded
eight-panel six-point-type Idareyoutotrytoreadme document? I'm
into week 6 on the drug and showing no improvement. I remembered something
about 6 weeks in this fold-me-up-like-a-spit-ball document so took a deep
breath and dived back in. However, those six weeks were at 2.22 mg/kg/day
because I underestimated my weight. At 90 kg, the minimum dosage should be
225 mg/day and I am just now on day 6 of 250 mg/day. For all practical
purposes, I am still at minimum dosage and was below minimum dosage
before. What I didn't find was any
reference to the P getting worse before it gets better, but in my case, what
might this mean? For a month I was taking so little cyclosporine I may as
well have been taking none at all. The worsening of my P was probably its
natural course as we move into summertime weather here.
I'm in my sixth
day of the increased dosage and, while there is no apparent change in
lesions (nor did I expect any this quickly), my knees are hurting more and I
grow so tired in the afternoons it is hard to keep my eyes open. Yesterday,
today and tomorrow I have colleagues staying with me at the farm, others
coming out for meetings, which I yawn through suggesting I'm
bored. I'm sure my eyes are
glazing over, too. Hanging in my office is a print of Van Gogh's
a portrait of Joseph Roulin from Arles, France, painted in 1888: Suddenly I
look at the rummy-eyed, bushy-bearded functionary and I see myself. There is
pain in this painting, too.
Day 39 - Saturday, May 27, 2000
Damn. Forgot my p.m. dose yesterday... And this after a
day where, for the first time, I thought I could detect definite
diminishment of redness in lesions. Well, yesterday was a mess with one
stay-over guest departing, another staying for early departure this morning,
and six local visitors for all-afternoon meetings and conference calls.
Then, it being Friday, two daughters and four grand kids in the evening
until way past bedtime. Yet the stress melts and a good night's
sleep is an easy gift after a beautiful six year-old grand daughter falls
asleep gently in my lap.
Day 41 - Monday, May 29, 2000 (Memorial Day)
Either I was seeing things last Saturday, or my missing a
dosage that day has set me back, because the lesions on my hands are just as
red. Torso and buttocks have, however, definitely improved.
Tomorrow I visit my GP, who will pitch a fit (warranted)
about my weight gain and lack of glucose control. I may punch him in the
Day 49 - Tuesday, June 6, 2000
Didn't punch the
GP in the nose eight days ago, but that wasn't
because he didn't have bad news
(most of which is irrelevant here). The real news here is that P on hands
and feet continues to worsen and now another lesion that is a real indicator
for me has erupted — inside my
navel. (It fills like a little wheelbarrow with flakes. I dutifully empty it
with tweezers every other day or so.) The PA in the knees and feet is
worsening and this morning I woke with a throbbing ring finger on my right
hand (last joint on the digit).
Early yesterday morning I visited the derm for routine
follow-up and the result was an increase in cyclosporine dosage. Now I am up
to 3.5 mg/kg/day. That is within .5 mg of the maximum recommended dosage for
treating psoriasis. (This calculates out to 325 mgs per day, and because the
drug comes in 100 or 25 mg capsules, I take one 100 mg and two 25 mg in the
morning, one 100 mg and three 25 mg in the evening.)
I've read some
postings at PsorHeads recently that mentioned pretty severe rebound upon
stopping a methotrexate regimen. I wonder if that is contributing to my poor
response to the cyclosporine? I know that for the first 30 days I might as
well have been taking nothing, because I was taking significantly less than
the minimum recommended dosage for my body weight. Any rebound tendency from
stopping the MTX would have found little resistance from this new regimen
during that period — and that's
when the lesions reappeared and the PA started up.
Further, the physician assistant at my derm's
office (who is my regular attending for these follow-up visits) says the
Novartis drug reps (makers of Neoral [cyclosporine]) told her many derms are
starting psoriasis patients on maximum dosage to get the flaking
under control quick. That, of course, is completely opposite how I started.
I have another appointment in seven days —
sooner than usual — because
they want to do a blood workup before I leave on vacation. I'll
be gone for over two weeks, which means they would have to wait nearly a
month before checking for any effects of this increased dosage. So far, all
lab work has revealed no change in kidney function. What has been worrisome
is blood pressure; however, the GP put me on Norvasc, a blood pressure
medicine supposedly safe to use with cyclosporine, and this has already
lowered my numbers significantly. I am popping more pills than ever. I used
to laugh at people who required little plastic pill-separator boxes. Now I
am one of them.
Day 52 - June 9, 2000
Fourth day on the 325 mg dosage and the redness in lesions
is definitely diminishing. This is most noticeable on my hands and feet. The
hands are still scaly but seem less so. Perhaps because the underlying skin
is less inflamed this just seems to be the case. I've
experienced some nausea and increased tiredness in the afternoons these past
few days, but I'm not sure I can
contribute this to the increased amount of cyclosporine. Clara's
morning coffee flavor has changed and that could be affecting my stomach. We've
had two grand kids and their mother living with us for a week, now, and that
could explain the fatigue.
In six days I leave for three weeks vacation (along with
Clara and two grand daughters). I am involved in some three-party gyrations
right now to ensure I have sufficient quantities of all prescripts to get me
through my time away. Things have been so iffy about the cyclosporine so far
I cannot help but believe it could be catastrophic to throw off the regimen
at this time.
Day 76 (day 28 at 325 mgs) - July 3, 2000
In the date tags from henceforward I'm
including the number of days at 325 mgs of cyclosporine daily. This may be a
more important number than the total number of days on cyclo (76) as it is
apparent now those lower dosages — anything
less than 325 mgs daily — were
ineffective. What I don't know is
whether those dosages were ineffective because of methotrexate rebound or
the early mistake about my body weight leading to too low a dosage, or both
... or neither. (Perhaps "ineffective"
is too strong a word. Perhaps without the cyclosporine, even at these
less-than-optimal dosages, my methotrexate rebound would have been quite
It may or may not be significant to
the count" starting with the 325
mg/daily dosage. For the time being, I'm
giving the drug the benefit of the doubt, which means it may take up to six
weeks at this dosage to show its maximum effect
today I'm concluding my fourth
My current state can be summed up thusly:
- Lesions on scalp and face, torso, upper and lower
arms, upper and lower legs are quiescent and either completely
invisible or of the palest salmon color. They do not itch and are
inconspicuous so these are as well as I could ever expect (short of
- Lesions on elbows, knees and buttocks are flaking
very slightly (not enough to peel) and are moderately red, which
means they are noticeable but not irritating (they don't
itch). My wife says there is no reason I could not go back to wearing short
sleeve shirts. But there is a reason: I don't
own any short sleeve shirts.
- Lesions on hands, fingers, feet and toes are
moderately red and flaking a bit more than those on elbows, knees
etc. These lesions remain conspicuous but at the moment they do not
- Nail psoriasis on my hands is returning slowly.
At the end of my methotrexate run (77 days ago) the nails were
clear, but now they are pitting and corrupted near the bed where the
growth is new. Some of the nails are elevating, indicating P
activity under the nail. But I must remind myself: Nail psoriasis
works slowly. The etiology of this nail
rebound may go back before I started the cyclosporine, when other lesions
were starting to flare while I was taking 20 mgs/week methotrexate. The
situation is about the same on my toenails.
- My knees are hurting more which I suspect is from
a return of the psoriatic arthritis. However ... there is little or no
swelling (fluid fill) which so characterized my PA flare in Spring
This leads me to wonder if the knee pain, now, is just a side effect of the
cyclosporine? The Novalis literature suggests muscle and joint pain can be a
side effect. While I was on vacation I did not notice it as much, or it wasn't
as severe, but in the few days since my return I have noticed it and it
seems to be worsening.
My attitude right now is to give the cyclo two more weeks
at 325 mgs/daily. It may very well be that I am enjoying maximum attainable
benefit from this drug right now. Certainly the skin lesions are bearable.
The worsening psoriatic arthritis is an issue. Again, the Novalis literature
does state that 100% clearing may be unobtainable.
But it will take a long time for me to forget the months
of total clearing I enjoyed on methotrexate in the fall and winter of
1999/2000. And which drug is the safer in the long run, metho or cyclo?
Would my rebound after eight months on metho have been thwarted by
increasing the dosage? (I was never on more than the minimum
dosage" of 20 mgs/week. I know of
other flakers who take from 30 to 50 mgs/week.) Also, cyclosporine is not
recommended for use beyond 12 months because the damage it does is not potential
but actual and, evidently, cumulative. So, in two more weeks, what
will I ask the derm to do? Return to metho or continue the cyclo? (Of
course, any discovered kidney dysfunction might answer this question for
Day 86 (day 38 at 325 mgs) - July 13, 2000 - Nearly
something that makes me feel very sheepish about my 48 days on an
insufficiently high dose to make any difference: Neoral's
retail price is about $.06 per milligram. At 200 mgs per day (my initial
dosage for the 1st month) I was consuming $12 a day in Neoral. For the next
18 days or so I took 250 mgs daily (still insufficient), or $15 daily. And
now, for the past 37 days, I've
been taking 325 mgs daily (finally working), or $19.50 per day. Summed, I've
spent $630 on insufficient doses of Neoral, and an additional $721.50 thus
far on effective doses. If I were to take the minimum sufficient dose for a
year (longest recommended continuous period on Neoral for psoriasis), I
would spend $7,118 on this prescription ($.06 per mg x 325 mgs daily x 365
days per year).
I am only playing this game because I have prescription
insurance. Each time I refill my Neoral prescription I pay a flat $10 per
pill size. I just picked up a 30-day supply: 60 x 100 mgs capsules and 150 x
25 mgs capsules (9,750 mgs). At $.06 per mg, that's
about $571. I paid $20 cash ($10 for the 100 mgs capsules and another $10
for the 25 mgs capsules). I presume my insurance carrier is paying the other
$551 — though they may pay less.
After calculating all this I simply had to sit back,
breathe deeply, and blink for a few moments. It seems so bloody outrageous
... but it's all in one's
perspective. What about folks who endure tens of thousands of dollars worth
of surgeries or other procedures that do not work to improve whatever is
wrong with them? What would I pay per year (or what would my insurer pay) to
stay alive, let alone have reasonably clear skin?
In retrospect it may be somewhat unfair to say any dose of
cyclosporine less than 325 mgs/daily is "insufficient"
for me. I do believe those first 48 days were complicated by methotrexate
rebound. Though I'm sure I needed
325 mgs/daily or more from the beginning, I'm
not sure I would have cleared that much sooner because the rebound from MTX
may have had to take its toll irrespective of the cyclosporine.
I don't think we
can say with any certainty what my minimum sufficient dosage might be until
the back end of this cyclosporine therapy, and only then if we decide to
taper me off. If we step down —
which I hope we will do in anticipation of going back to methotrexate —
we may find that my P remains stable now at dosages well under 325
mgs/daily. At least, it would be good to discover that.
Four days ago (day 82 on cyclo, day 34 at 325 mgs/daily) I
stopped using Temovate and Westcort topicals. I deemed my lesions
sufficiently quiescent to forgo the topicals. I have used Gold Bond
medicated body lotion (applied mornings only) to keep my skin supple —
in essence, to replace the emollient qualities of the topicals I have used
daily for so many years. Three days ago my derm inspected me (including
scalp) and said to his associate (also participating in the inspection)
this fellow used to have psoriasis?"
Blood work-ups continue to be unremarkable, which is good.
(I haven't the courage right now
to calculate what the cost of lab work has been!) Nor has blood pressure
been a problem (which it often can be on cyclo regimens) —
but the BP is moderated by a daily dose of Norvasc, which was prescribed by
my GP independent of my dermatologic adventures. So I'm
not sure we would detect it, even if the cyclo was aggravating my blood
Day 89 (day 42 at 325 mgs) - July 17, 2000
I believe I'm
about as clear as I was when Methotrexate was working its best on me. This
is to say I have no flaking lesions, a few are light salmon colored but most
are invisible, my nails show signs of the dark days at the onset of this
regimen (nearly three months ago) but appear to be once again growing
healthy from the cuticle. My psoriatic arthritis is not faring so well; my
knees grow stiff and painful after they are still for awhile, but they are
not so swollen as they were a year and a half ago (before the MTX) and I'm
not yet compelled to return to the rheumy. The ring finger on my right hand
is taking on a swollen and deformed first knuckle and it smarts sometimes.
In fact, I have two fingers on that hand that grow stiff and painful at
times. Is this PA? Probably, but I am not certain.
Yes. In this state I should not complain. I can go forth
among the people and be well hidden; successfully pretend not to be what I
am. I could even wear short sleeves and probably draw no comments or stares.
In short pants and sockless sandals the salmon-colored lesions on my knees
and feet would still draw some notice. But I intend to test none of this. I
have grown comfortable in my long sleeves and year-round pants ... and the
sweats I wear most of the time are too comfortable to forgo. And socks with
sandals? White-bearded men in hats are permitted this, too.
I will continue to visit the derm every month and have my
blood and urine analyzed for warning signs of imminent self-destruction. And
such signs will surely come for cyclosporine is a poison, a disabler of the
immune system and, eventually, the organs that support it. If such signs do
not come before I reach 365 days on this regimen we will pretend that the
signs are there and act accordingly.
Act accordingly? I believe I'll
have some say in this. The switch, nearly three months ago, from MTX to
cyclosporine was bungled in my estimation and subsequently hundreds of
dollars were wasted and over a month was lost on useless therapy. No, when
it is time to turn my back on the cyclosporine, I believe we will taper off
and recommence the MTX gently so that the therapies overlap. Perhaps we will
not overlap these meds if the P stays quiet while I shrink my intake of
cyclo. We shall see.
Would I recommend this therapy to other flakers? Do I
regret having waited ten years before trying it? I would not recommend this
therapy without strong reservations. I do believe in another fifty years
drugs like cyclosporine — known
poisons and destroyers of the body's
precious immune system — will be
regarded as we regard blood-letting today: primitive, dangerous, almost un-medical
in their eventualities. The foolishness of this therapy is compounded by its
great expense. No, I would not recommend this therapy without strong
reservations. Cyclosporine candidates should be debilitated in some way by
their flaking; if one's P is
largely a cosmetic problem, one should walk away from cyclosporine. Wish for
the best with light therapy and mild topicals.
I would not have found my way to this course had not my
psoriatic arthritis threatened to debilitate me. And before I came to
cyclosporine, I acquired my taste for bittersweet flakelessness and
pain-free mobility on methotrexate which is, itself, a poison. Cyclo was a
recommended alternative when, for whatever reason, the MTX stopped doing its
fine work. And I accepted the recommendation because, by then, I was
passionate about my new lesion-free, pain-free lifestyle.
So. It is a certain thing that if I survive I will say adieu
to cyclosporine and return to methotrexate —
or perhaps try Soriatane or something new. I hope that adieu will be
permanent, but I don't want to
sound too down on cyclo. It has, ultimately, brought me back here, to that
state of flakelessness that has been my goal all along. -Ed (July, 2000)