Dewke Methotrexate Journal: 1st 12 Weeks
July 14, 1999 - October 11, 1999
|July 14, Wednesday
Am waiting for blood test results from my derm. If my liver enzymes aren't out of whack I
should be able to start taking Methotrexate (MTX) this Friday. Four pills Friday morning,
four more pills Friday night, then no more pills until the next Friday, then eight pills
again. I've already picked up the prescription: 32 pills in the bottle. A one-month
Until three months ago I was dead-set against MTX. It scared me. I know my liver is beat
up. The enzymes were way out of whack at the end of my drinking days. They wouldn't let me
take MTX at that time. I got the idea the drug was a liver killer. I was killing my liver
quite fine without it.
Over the past couple of years the
occasional blood work-ups have revealed my liver enzymes are back to normal. For a long
time I still thought of MTX as a liver killer. My liver was on the mend. Why would I want
to take MTX now?
Then three things happened almost at the same time to make me reconsider my attitude
First, I received videotapes from the National Psoriasis Foundation made at their 30th
anniversary conference in New York City in October 98. I watched these a few minutes
at a time across several weeks. Most noteworthy was the almost universal declaration by
speakers that MTX was the most effective treatment to palliate psoriasis. It was,
according to some of the speakers, the only drug known to improve both skin P and
Second, my skin P flamed worse than it has in years. I knew this was coming. Since last
fall I've known it was getting worse, and that a really bad period was coming. Lesions
that used to improve predictably across Winter didn't. About March the explosion began.
There was lots of stress, too....
Third, my presumed psoriatic-arthritic right knee swelled to twice its size and became
debilitatingly painful. The other knee inflamed, too. There were days when I could hardly
hobble. Something inside or near the right knee joint "burst" at one point and
calf and foot swelled, bruised, added to my misery and debilitation. The knee was
aspirated twice by my GP and seemed to worsen. It all drove me to my first
She diagnosed PA and said, "You should be on Methotrexate." That clinched it.
Between the rheumy and the derm it is agreed I should be on MTX. The rheumy has conducted
her round of blood tests and the derm has conducted his round, too. We are waiting on the
results of the derm's tests (he ordered a urine work-up, too). The derm noticed on the
rheumy's test results that I have elevated "C reactive protein." The derm
doesn't know what this is or what it means. I have a call in to the rheumy to get an
explanation. That she hasn't called and said "Don't take M" gives me confidence
this test result, whatever it means, is not a show stopper. Nonetheless, it would be nice
to know. One thing occurred to me. How in the world could someone shedding skin as fast as
I'm shedding skin, suffering joint and limb pain as much as I'm suffering ... how in the
world could someone like me have absolutely normal blood test results? We shall see.
|July 15, Thursday
I am angry. For two days, now, I have been unable to get the rheumatologist to call me
back and tell me what "C reactive protein - elevated" means from her blood test.
Also, derm's office called back today to say the urine tests did not work because the
sample wasn't handled properly (something omitted at collection time). The blood work-up
looked good, the nurse said, except the glucose, which was high (230-something) and though
overall cholesterol level was okay, the ratio of good to bad cholesterol is no good (too
much bad cholesterol). I asked specifically about the liver enzymes and she read off a
few, all quite below the normal threshold. "Can I start the MTX tomorrow?" I
asked. "I'll check with Dr. B., but I imagine he'll say okay.'"
So, this afternoon another nurse calls and says, "Your glucose was
high." I know that. "We need you to come in and leave another urine
sample." "I know that, too, and was planning on coming in tomorrow."
"Oh. Good." "So, can I start on the MTX tomorrow?" "Dr. B. wants
to wait on the results of the urine test." Damn. Damn. Damn. Just the news of this
makes my knees ache, my legs start to buckle. "We should call your internist with
that glucose level," she says. I want to tell her to go to hell. Instead I say,
"He knows. He sees my blood sugar level test log every ninety days or so. This is not
news to him." "Okay," she says. Damn!
|July 16, Friday
Rheumy called. "C Reactive Protein" is elevated when inflammation like that from
arthritis exists. In other words, lab work confirmed I was telling the truth. Well by
golly; my integrity has been verified!
|July 19, Monday
Derms office called, said keytones (related to blood glucose level) were high in the urine
work up, but I could start the MTX.
|July 20, Tuesday - a.m. - DAY 1
First four MTX pills this morning around 9:30. Almost forgot them! Must take four more
this evening before going to bed. Then that's it until NEXT Tuesday. Hopefully I can
remember this regimen.
Got very nauseated around 10:30. Took the
pills on an empty stomach and decided I was just reacting to the binding agent in the pill
... or anxiety. Anyway, I willed the nausea away with four pieces of pumpernickel toast.
I watched my hands for about 5 minutes at noon. During that time I
could see no improvement of the P lesions that cover the back of them. Evidently, MTX does
not work like Dr. Jekyll's elixir.
Tuesday - p.m.
I remembered to take my four pills tonight. Okay. First week's treatment complete. Now I
await the miracle.
|July 21, Wednesday - DAY 2
I laid in bed last night and concentrated on feeling the lesions on my legs, sandwiched
between the sheets. I could not feel them becoming smoother, flatter, or less red. A
watched spot never diminishes....
Pain in my right leg and foot
(psoriatic arthritis) woke me several times during the night. If I turn over wrong,
shooting pains wake me as though stabbed.
|July 25, Sunday - DAY 6
Last Thursday (22nd) I flew to Dallas. I was anxious about this business trip. It required
that I drive 70 miles to Louisville airport, near dawn, then fly to Dallas. I was worried
about my legs. Over the past few weeks it has often been agonizing to drive from home to
downtown Lexington, which is a trip of a dozen miles or so. I have returned home from
these excursions barely able to get out of the car. I was concerned about how much worse
my 70 mile trek might be ... then the walk in the airport to the plane's gate ... then a
two-hour sit-down in the plane.
But, it did not go badly. I was
stiff and sore when I got to the airport, but not debilitated. The walk from parking lot
to plane's gate in fact loosened me up a little, I think. I met colleagues there without
limping. The plane flight was not a problem for me. The only downside: I found I could not
walk as fast as my colleagues from plane's gate to ground transportation once we arrived
That afternoon we visited the Arlington Convention Center. I spent
hours on my feet, meandering about. For a time a few of us sat Indian style on a hard
floor in a huge room, making plans. All of this DID take its toll on me. By 4:00 I was
wanting to be alone in my hotel room. I rested and napped. I took my
pain/anti-inflammatory before dinner, and then went to dinner at a fancy Cajun restaurant.
I was okay. No agonies.
That night I slept poorly, but it wasn't pain in the legs that kept
waking me. I think it was that spicy Cajun dinner.
At dawn on the 23rd I was up and ready for the return trip to
Lexingtona complete reverse of the day before. And, I am happy to report, equally as
Yesterday (Saturday, 24th), Clara and I hosted a cook-out for
colleagues from Clara's work. I was on my feet cooking at the Weber, then playing croquet.
Amazingly, no agonies. I was stiffening by 10:00 p.m., at bed time, but nowhere near as
painful as it has been.
This morning I noticed a diminishment in the reddening and flaking of
most lesions. I am afraid to consider, let alone write, that the MTX may be working....
|July 28, Wednesday - DAY 9
Yesterday was my second dosage of M (a.m. & p.m.). Two days ago my skin lesions
generally looked better than they have in months. No protuberant flakes, less reddening,
much diminished itch. Also, two days ago, I ran out of my Diprolene cream. Yesterday and
again today I have had to use Westcort everywhere. Westcort is the mildest corticosteroid
I use. It is prescribed expressly for use on face, ears and groin. I've used it full-body
for the last year or so as the "low end" of my steroids cycleto give me a
break from the heavier steroids. If I am already more-or-less quiescent, the Westcort can
sometimes maintain that for a few days. If I am at all active on the larger lesions, the
Westcort usually has no apparent effect.
This morning I noticed
the larger, most aggressive lesions are worse. These include lesions on my elbows, knees,
forearms, calves, thighs and buttocks. They are redder than they were two days ago,
thickening and beginning to flake again.
Discontinuation of the Diprolene? Seven days since my last dosage of
MTX (until yesterday)? I want to attribute this apparent reversal to something, but I
don't know what. Perhaps I should just attribute it to the fact that yesterday I paid
bills. That's always stressful.
|July 29, Thursday - DAY 10
This morning's evidence suggests the improvement experienced earlier this week in skin
lesions can probably NOT be attributed to MTX. The lesions are worsening again as I
continue the once-a-day application of Westcort, and the benefits of the Diprolene (which
ran out on Monday) continue to fade.
I take Dicloflenac for
joint inflammation and pain so when the legs AREN'T bothering me I'm not sure whether to
attribute this to the MTX or the Dicloflenac. After any prolonged sitting the legs are
stiff and sore upon risingbut this works itself out pretty quickly if I move around.
There is considerably more stiffness and pain at night (after I've been sitting in the
recliner). I have slept soundly, though, since I've been on the
Dicloflenacexcepting, perhaps, a couple of nights (July 21)and for the past
few days rising after a night's sleep has been pretty painless. MTX or
|August 2, Monday - DAY 14
Friday I refilled my Diprolene (cream) and started applying it again Saturday morning.
After this one application the worsening of the lesions seemed to stop. As of Sunday p.m.
they had not reversed, yet, but I'm confident continued use of the Diprolene will improve
Yesterday morning my legs felt so good I did not take my
a.m. dose of Dicloflenac. This was a mistake, by mid-afternoon I was walking crippled,
again. I took my p.m. dose early and was able to sleep alright, but this morning I can
tell there's not as much of that medicine in me as I'm wanting.
What of the MTX? Still nothing dramatic and obviously MTX-related. My
third dose is tomorrow.
|August 3,Tuesday - a.m. - DAY 15
One-half of third dose in me this morning. Noticed something unusual about plaque lesions
on arms and torso: They are lighter red inside and surrounded by a "border" of
darker red. I have seen this in photos but not that I can remember on myself. This is also
my fourth day of regular a.m. applications of the Diprolene cream (refilled last Friday).
It is impossible for me to know if the improvement in the lesions is from
or a combination. Historically, Diprolene will do thiscause the lesions to quit
flaking, flatten and lighten in color. This "crimson ring" around the lesions,
being different, makes me wonder.
Tuesday - p.m.
Four more M pills tonight if I don't forget. (Haven't yet.)
Oh yes. PA flared yesterday afternoon. Very painful in legs all night.
Knew I would be unable to sleep when I prepared for bed at around 10:00 p.m. In spite of
better judgment, took two Dicloflenac (prescript calls for one in the morning and one at
night). I slept well and awoke this morning with no pain in my legs.
|August 10, Tuesday - DAY 22
Very disappointing week just ended. Lesion activity has worsened generally (reddened
again, flaking on the major lesions, itching). Also, the PA is back bad: right leg and
foot is swollen (inflamed). Since last Tuesday I have been taking my allotted two
Dicloflenac per day at night (rather than one in the morning, one at night). I'm sure
that's absolutely wrong logicbecause I'm metabolizing too much at a timebut it
has permitted me to sleep through the night.
Late last week I
bought some generic antihistamine caplets and an anti-itch spray. I've tried both at the
same time and the itching abates somewhat. Which one's doing it? Or is it both? Who knows?
That's what's stupid about trying more than one thing at a time.
I'm running out of the Diprolene cream every three or four days. I
think I'm getting a smaller tube than I used to and, of course, I used to use the
ointment, not the cream. I'm going to try to get back on the bigger tubes of ointment.
This Diprolene seems to have no effect on my hands, especially. I must occlude them for
there to be any discernable improvement.
Gave blood for lab work up yesterday and was expecting call with
results today. (Won't I ever learn?) Unless they call, I'll renew my prescription for MTX
and continue on for another month. If there is no change after two months...?
|August 11, Wednesday - DAY 23
It is disgusting. Ran out of Diprolene cream this morning. Finished the last of it on my
hands; used nothing but the anti-itch spray on the rest of me. The lesions are thick and
covering with scale tonight. If I stare long enough I can almost see the white scale
growing. So. What is the MTX doing for my lesions? It is disgusting.
|August 13, Friday - DAY 25
Thursday I used no Diprolene and by Thursday night my legs were white with scale. The bed
is full of flakes this morning. Frantic, yesterday afternoon I begged the nurse answering
the doc's phone to telephone a prescript for Diprolene OINTMENT to my pharmacy and someone
did so. Late yesterday I picked it up. I will use it this morning and, no doubt, I will
nip this awful relapse in the bud. If past experience repeats itself, today's dosage of
Dip OINT will more-or-less "freeze" the lesions in their current state.
Tomorrow's dosage will start the improvement. By Monday I will be better, meaning the
white scale is gone, the lesions are merely red, elevated and itching.
While I had the derm's office on the phone yesterday I inquired about the lab
work and was told nothing about the results, but that I could renew my MTX prescript. So,
I did that at the pharm yesterday, too. Why? It has been four weeks now. What has the MTX
done for me? I must do some research and find out what the typical lag time is between
starting treatment and getting some results. At the moment I am very disappointed.
... But thank God there are countervailing forces. Am becoming
increasingly intrigued by the little book Mrs. M. lent me, Reverse Aging, by Sang
Whang, a slim 121 page book extolling the benefits of alkaline water. The book has been
reprinted several times since 1990 and, according to the blurb on line at Amazon.com,
30,000 copies have been sold. It is a compelling read. Mrs. M. is a distributor of
products associated with Whang and his theory so, of course, her attitude towards it all
is utterly predictable. It is too bad that I am predisposed to be doubtful and suspicious
of health products and advice that does not come through established institutional
channels. I really do believe the institutional channels need a sound shaking up. For all
of the "hard science" that is claimed to be the foundation of modern medicine, I
sure witness a lot of closed-mindedness and illogical dismissal of ideas. So I will
continue to listen to people like Mrs. M., and read books like Reverse Aging, and I will
apply some of what I learn.
If Methotrexate fails to help me, perhaps it is not the end of the
|August 17, Tuesday - DAY 29
I feel a little better. I learned from some of the Methotrexate information at Mark Shaw's
homepage that the medicine may require "3 to 12 weeks" to start working. I just
took the first half of week 5's dose this morning. Also, last week's severe backslide of
the skin lesions appears to have corrected already. My hand lesions are dim pink and
almost flake free (even six year-old grand daughter Alex commented). Other body lesions
are redder, but flaking has diminished considerably. Itching is periodictwo or three
bad spells per dayrather than constant. Of course, this probably has more to do with
being several days into the Diprolene Ointment. Who knows? But I do feel a little better.
|August 25, Wednesday - DAY 37
not remember my MTX dose until yesterday evening, so I took four pills then, and the four
I should have taken yesterday morning I took this morning, instead. Now, if the whole
regimen proves fruitless, the docs can point to this entry and say, "Well, how could
you expect it to work when you could not follow directions?"
If MTX takes a full twelve weeks to "visibly improve" my
psoriasis, I am, as of this morning, exactly half-way there. Happily, at this moment,
there is some visible improvement; my hands especiallyand this is unusual because
the improvement has NOT involved occlusion. I did finally get back to the Diprolene
ointment (rather than cream), and perhaps the improvement in my hand lesions can be
partially or totally attributed to that.
There has been considerable diminishment of itching over the past week.
This, I know, can be attributed to Benedryl, an antihistamine I am taking because of an
allergy flare-up. My sinuses are in terrible shape. Clear mucus suggests allergies as
opposed to a viral or bacterial infection (I am told), and it has definitely been my type
of allergy weatherdry, dusty, hot....
Most of my lesions look different. Some are still thick, red and
crusty, but most have smaller patches within them that are fading to normal flesh color.
But this is not uniform. The biggest lesionsthe ones on my calvesare less
flaky but as red as ever.
My mood was realized in a paltry but violent storm late yesterday
afternoon. Rain came hard but only for a few moments (not nearly enough to counter our
general drought). Violent winds broke two huge sections off trees from the row of locusts
between our property and the road. Traffic was stopped until the county men came with
their chain saws and chopped up the debris. Somehow the newly-painted fences were not
damaged. But later, surveying the damage to our grand old trees, I nearly wept. The scars
are brutal. Perhaps terminal.
|September 7, Tuesday - DAY 50
taken first half of my eighth dose (8 weeks). Here's a recap of where I think I am as a
result of MTX.
1. Psoriatic Arthritis symptoms 99% gone. (An occasional twinge of
familiar pain; that's all.)
2. Scalp cleared to the touch.
3. Hands about 85% clear.
4. 40% of the rest of my lesions are pink and flake-free.
5. Recalcitrant lesions are elbows, lower back, buttocks, knees and calves.
When I ran thin on Diprolene ointment early last week, the elbows,
calves, knees and buttocks lesions bloomed into their old flaky selves. Obviously, I still
need the Diprolene.
Must call derm's office for a refill on the MTX, which means they will
probably schedule me for another blood work up.
|September 12, Sunday - DAY 55
I was wrong about the probable blood work up with my third MTX refill. They just
refilled it and told me to schedule an appointment for the next month (after week 12
dose). That means my derm wants to see me andI'm sure this timethere will be
another blood work up. I'm looking forward to seeing the Dr. primarily because I want to
ask him about liver biopsies. I've read that blood tests have become so sophisticated
liver biopsies are no longer routine unless something in the work up points to invasive
investigation. But I also want to see the Dr. because, by week 12, I will have reached the
"published long end" of the time it takes MTX to work. I know these things are
not "pat." I also know that there has been no adjustment of my dosage level and
this is a factor in the efficacy of the therapy. As one Flake HQ correspondent put it this
month, "they kept telling me to take it for another month, and then another month,
and then another month again." In other words, in another three months I may still be
wondering if MTX is doing all it can do for me at that time, or if I need to "take it
for another month."
I went to see the rheumy this week and
she was, in her own words, "surprised at the improvement." Her examination of my
knees revealed "fluid levels way down and the knees are cool." She said she was
surprised because the MTX had worked so quickly, and she became even more surprised when I
told her I was taking eight pills per week. She said that, in her experience, for a man my
size, that was a "light dose."
I showed her my only current vestige of active arthritis, the second to
smallest toe on my right foot. It's inflamed and swollen but not all that painful. She
called it a "sausage toe." (She claims that's a legitimate term.)
This morning I was surprised to see the lesion on my right ankle had
blossomed to a full 10 on the Dewke Scale of Flakiness (1-10). The flakes that form here
are not thin and flake-like. They are hard, thick bits of yellowish crust that must be
chipped away. I have deduced the flakes here are different because this skin is nearly
occluded every day beneath a nylon sock. I accomplish the chipping away by softening the
tissue in a bath, then, using a terrycloth towel, I rub with righteous indignation. Having
this lesion erupt did serve to remind me how vastly improved most of the rest of them
really are. Perhaps the MTX is having a greater affect than I surmised.
|September 15, Wednesday - DAY 58
Now I have a "sausage finger," too. Top joint, ring finger, right hand. Noticed
it was swollen yesterday; this morning it is stiff and sore. Also note: Have just
experienced our first two low-temperature nights of the fall.
|September 18, Saturday - DAY 61
Just HAVE to note this, though it's not completely appropriate: Wife Clara has had
cruddy elbows and a sore on her ankle for some months and finally asked me to make an
appointment for her with my derm. She attended that appointment yesterday and he diagnosed
heryou guessed it!psoriatic. He said we are only the third couple he has
treated where both were psoriatics and one or both manifested subsequent to the marriage.
Clara, of course, insists she is living proof that sleeping in another person's flakes is
While I'm imbedded in a sidebar entry: Environmental
allergies have hit me bad this fall. Worst I've experienced in my nine years in the Blue
Grass. Could be the move back onto a farm compounded by the extraordinary drought-induced
dry & dusty air. It is unfortunate that this allergy reawakening occurs during my MTX
trial, as I still feel allergies and my P are related. If I am correct, the allergies are
an added complication. Would I be responding better to the MTX if the allergies weren't
|September 27, Monday - DAY 70
Taking a moment this Monday morning while on a business trip to Atlanta and enjoying the
predictable sameness of my overpriced room at a Marriott Hotel, to think about P-things.
This irony is not lost on me: Here I am at the end of my first decade as a
flaker, having experienced the disease getting progressively worsepunctuated by
periods of apparent remissionand just now starting on the most dangerous of
therapies ... here I am at this decade milestone ... and wife Clara suddenly becomes a
flaker! Her case is mild and permits a smiling response to the irony. But quickly also
comes the muttered prayer: Oh God, let it get no worse.
I mentioned those "periods of apparent remission." How many
dozens of flakers have written to FlakeHQ over the last 3 years and talked about these
periods? Women especiallyand especially when they have been pregnanthave
written they experience remission. The next apparent trigger for remission is a
new-to-the-flaker intense therapy of some sort. Often these will bring some months of
Taken as a whole, these inevitably temporary remissions are depressing
as hell. I am reminded of that docudrama starring Robin Williams and Robert de Niro in
which de Niro and his fellow catatonics are brought to normalcy, temporarily by an
experimental drug. The movie is titled Awakenings. Since we flakers are not so
debilitated our occasional returns to normalcy are not so sad nor so inspiring.
And I am somewhat surprised that I do not read more depression after
relapses into the FlakeHQ correspondence. If anything, I detect the contrary: a sort of
ebullient and indefatigable optimism; a persistent belief that if it went away once it can
and will go away again. Living with one's concentration on the fleeting good times....
I am reminded of my 18th Century English Poetry professor who made this
seemingly irrelevant assignment: "Write a description of a Volkswagen Beatle. Be as
accurate as you can." We wrote, of course, about the shape, the position of the
engine, its unique engine sound, its fun driving, etc. The professor's response went
something like this. "Not one of you looked outside the box. No one mentioned that on
average a Volkswagen spends 95% of its timeor moreparked and doing absolutely
nothing. Not one of you described what a Volkswagen is when it is not being driven or
admired. Isn't that strange given that by far most of a Volkswagen's time is spent not
being driven and not being admired?"
The time we flakers are in remission may be comparable to the time a VW
Bug spends being driven and admiredonly a small percentage of time over all, but, on
reflection, the only time we choose to consider.
|September 28, Tuesday - DAY 71
At 5:30 a.m. the southbound traffic on I-85, beneath my 15th-floor window, is steady.
When I squint to blur my vision I create an illusion almost like a time-lapse photo; I see
dense ribbons of headlights winding and narrowing to the horizon.
Atlanta is a big city. I bet there are many Atlantians who claim not to be
southern, who in fact have no southern heritage. The big city ingests southernity and
makes of it just one more spice in its bigger cultural concoction.
Despite my fondness for Kentucky country living, when I am here I feel
the faint embers of an affection for city life. I cannot call it cosmopolitanism because,
even when I lived in cities, I was not cosmopolitan. I took much more than I gave; looked
more than participated; clung to anonymity as if it were some shelter and protection.
Even so, given certain conditions or circumstances, I could be
compelled to live in a big city again. (Just writing about it tugs at me, makes me yearn
for it.) I experienced big cities when I was much younger, much healthier and much more
profligate. Perhaps that was the ideal way to experience them (I have heard the old saying
so many times: "New York City is for the young"). I am afraid that now, at this
more pious age, I would find city life disappointing in its similarity to country
lifeto any kind of life. I mean, occupying a climate controlled space is occupying a
climate controlled space, no matter whether it's in the east side low 100s or Shannon Run
Road in the Blue Grass. In New York I would pay more for the same stimulations. (How do
they have garage or yard sales in a city with so few driveways or yards?) And I would miss
my thoroughbred neighbors, my peacock neighbors, my sneezing wheezing springs and summers
and the charms of worry about the health of my sceptic system. Oh well, back to business.
Today is MTX dosage day. Dose 10.
Status is this:
Scalp P seems to be clear. I did not pay close enough attention to when
this occurred. But I noticed the flaking had stopped several weeks ago. I still shampoo
daily with T-Gel or Pentrax (usually T-Gel).
Lesions on torso are at 2 on my scale of 1 to 10 (1 being invisible 10
The two usually hard and thick lesions in the center of my back are
almost unnoticeable by touch.
Lesions elsewherenavel, groin, sides of midline, chestare
flat and pink.
Lesions on elbows and forearms are 3 on scale of 1 to 10. Still bumpy
but not flaking and salmon colored.
Lesions on wrists and hands are pink and appear to be changing from
plaque-type to pustularor from large uniform plaques to small, pimple-sized plaques.
These sometimes itch.
Lesions on back of hands are more visible today than they were a week
Lesions on buttocks are rough but much improved. I'd put them at 3.5 on
Lesions on thighs3.5.
Lesions on calves4.5 and itching occasionally.
Lesions on ankles and feet6 and itching the most. Still red and
For the past four to five weeks I've been taking 6 Benedryl pills a day
for my sinus allergy flare-up. I believe this compromises the validity of my itch
reporting. The antihistamine in Benedryl palliates itching. The fact that my hands, ankles
and feet itch at all while I am on this Benedryl regimen makes me suspect itching in
general would be much worse than I'm reporting.
|September 29, Wednesday - DAY 72
My hands are bad again. Three days ago, when I arrived in Atlanta the lesions were still
almost invisible except for pimple-like explosions with tiny dry-white flaky summits.
These itched and when scratched they looked worse.
all day yesterday and the day before, on location, I have been too busy to pay much
attention (probably too busy to notice I was scratching?). This morning the lesions are
about 60% solid red again. The pimple eruptions are still there, but not so blatant as
these promontories in a landscape of crimson. This disappoints me. For me the hand lesions
are mood-setters. (Lesions on my face are more so but, knock on wood, have been quiescent
for a few years now.) Since hands cannot be hidden, lesions here are like an announcement.
Every time I extend a hand to be shaken I am broadcasting a message that cannot be clear
and certainly constitutes noise between me and the hapless victim of my condition's
Now, of course, I must wonder if the switch from Diprolene to Temovate
is somehow to blame. More likely, I would think, is this being in Atlanta on assignment.
This type of life and work becomes increasingly more annoying to me. I remember when I
relished itnot so long ago! It would be more enjoyable, I know, if I went out and
about more; if I tried to learn something of the place I am forced to be. But this is a
logical, positive behavior I have always resisted, even when I enjoyed the travel. (A
hotel bar was a fine parking place for me in a past life.) Of course, if I were in Paris,
London, Istanbul, Moscow, Tokyo or Peking I probably would be out and about. Atlanta is
not new or exciting to me. Those years of contract work for Georgia Power and Southern
Company made this place seem familiareven though I only became intimate with a few
offices and as many hotel bars.
But I digress.... You see, P on my hands is a mood-setter. My
depression parallels the waning and the waxing of those lesions.
|October 6, Wednesday - DAY 79
Yesterday was my 12th dosage. I read somewhere that 12 weeks was the outside length of
time for determining the effectiveness of Methotrexate in a particular case. If that's to
be taken literally, I must conduct a thorough assessment of myself next Monday. I summed
it up yesterday in an e-mail to my derm, like this:
So far I've been quite pleased. The psoriatic arthritis has quieted almost completely,
stiffness only when I've sat awkwardly for a prolonged period or put unusual strain on my
knees. Scalp psoriasis has also quieted almost completely. It has been so long since my
scalp wasn't flaking I am in awe of the experience! On a scale of 1 to 10, one being
"invisible" and ten being "at their worst," here is a breakdown as of
today: Hands-2, arms-3, torso-2, lower back and buttocks-3, hips-3, calves-4, ankles and
feet-5. I have also noticed (for the first time in over a year) healthy nails growing from
the quick of my fingers (can't say the same for the toenails).
|October 11, Monday - DAY 84
Today concludes my twelfth week on Methotrexate. Here's my self-appraisal based on my
scale of 1 to 10.
Psoriatic arthritis - 0.5
Scalp - 0.5
Face - 1.5
Hands - 2.5
Fingernails - 3.5
Arms - 2
Torso - 1.5
Lower back/buttocks - 3
Groin - 1
Hips - 2.5
Calves - 3
Ankles and Feet - 4
Toenails - 5
Last Friday there was another flurry of phone calls to renew my
prescription (32 pills, 4 weeks supply) and arrange another blood test. The monthly blood
tests are expensive: just under $200 from the lab of which my insurance is slowly paying
its share. The MTX itself costs me $10 per refill (per month)also because insurance
pays a share.
I am still using a category 1 topical corticosteroid (currently
Temovate, but earlier in the trial it was Diprolene) once a day. I apply this to my hands,
elbows, lower back/buttocks, and all lesions on my legs. I know this is helping because
for the few days during this trial I was out of topicals there was some rebound. For the
past three to four weeks I have not been using any topicals on my torso and these lesions
remain almost invisible.
Normally, at this time in October when the nights are getting quite
cold and autumn is evident everywhere on the farm, I am having a flare. I can't recall the
last Halloween when my hands were not in terrible shape. Last year my psoriatic arthritis
was becoming quite troublesome about now. Legs would be shedding flakes with every step at
this time of year in the recent past. Knock on wood: So far none of that this year. The
numbers above tell the tale.
I am having another blood test this morning. I imagine I will pass to
the derm's satisfaction and he will not call with instructions to discontinue the MTX. I
remember, at the onset of this trial, that was my principle concern. I spent more time
thinking about liver damage than skin improvement. That was probably a natural and
warranted predisposition. For so many years I was warned that my liver enzymes were
"elevated" and I was at risk.... Finally, having corrected all of that to my
doctors' satisfactions, it is unnerving to put that all at risk again.
There is no question in my mind that the MTX has improved my quality of
life. I've begun to rationalize the dangers of the therapy. I say to myself the monthly
tests will reveal any liver damage while it is quite mild and reversible. If it comes to
that (I say to myself) there is Cyclosporine to try next.
And what about other side effects? I've noticed nothing unusual until
last week when, for several days, nausea curtailed my normal olympian coffee consumption.
I recall only now that nausea can be a side effect of MTX. Nausea can also be a side
effect of olympian coffee consumption. As this came about suddenly in my eleventh week of
MTX therapy, but immediately upon re-opening an old-but-refrigerated can of coffee that
had not been too good in the first place, I think the culprit is pretty obvious. Since the
can of coffee has been disposed the nausea has gone away.
Would I recommend Methotrexate to another flaker? I would not do what
some derms have done to me; that is, make me feel like a cowardly assand a lost
causefor not trying MTX.
Exactly one decade ago at this time of year I was suffering from a
terrible case of dandruff and was in the process of moving from western Colorado to
central Kentucky. "Psoriasis" was a word I could not spell without looking up,
and I had no idea what it was. It had been mentioned to me only once with regard to the
dandruff, by a barber in Colorado, and I had shrugged it off. Time and a more rigorous
application of dandruff shampoo would, I was sure, correct the problem, no matter what it
was called. It would be many more months, and require the first outbreak of lesions on my
face, before I visited a doctor about my skin. And even that first visit to a derm did not
result in a psoriasis diagnosis. More months of panic passed, during which the lesions
spread from my face to my torso and limbs. In less than three years I went from scalp
psoriasis to over 50% effected.
I can't recall when I first learned about Methotrexate, but it must
have been in 92 or 93. It was not an option for me at the time because I was
still using alcohol and refused to give it up. Later, by the time I stopped using alcohol,
I was so anxious about the state of my liver (and other systems) that I would not consider
a regimen that would endanger my liver all over again.
What changed my mind? The explosion of my psoriatic arthritis late last
year, followed by an almost accidental "MTX promotion campaign" combined to
break down the last of my resistance. That accidental promotion campaign was the arrival
of the NPF 30th Anniversary Annual Conference videotapes. MTX was highly touted many times
on those tapes as an effective but underused therapy, and one of the only therapies known
to improve both skin psoriasis and psoriatic arthritis. When I watched these tapes I was
as near to being disabled as I have yet been. I was unable to walk without crutches or a
cane; on some days unable to drive. The final straw that broke my resistance was the first
word out of my rheumatologist's mouth: Methotrexate.
I'm told that increasingly sophisticated blood tests have already, or
soon will, eliminate the need for occasional liver biopsies for Methotrexate patients.
I've also heard that continued data collected on MTX therapy is refining effective dosage
levels and further reducing patient risks. If all of this is true, then I suspect more
people will try the therapy and eventually the fear associated with the drug will fade.
I don't know how long I will want to or be able to take MTX. I know
that, right now, it's helping me end a year much healthier and happier than I began the
year. I could say the same for the decade ... but probably not for the millennium. -Ed
|"Dewke Methotrexate Journal: 1st 12 Weeks" is also available from FlakeHQ as
an MS Word or WordPerfect file. Email for a copy.