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 toward M.

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 psoriatic arthritis.

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 rheumatologist. 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.

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!

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.

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.

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 in Dallas.

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 Lexington—a complete reverse of the day before. And, I am happy to report, equally as uneventful, pain-wise.

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....

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.

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 rising—but 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 Dicloflenac—excepting, 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 Dicloflenac?

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.

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.

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...?

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. Somewhat depressed...

... 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 world.

I did 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 especially—and 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 weather—dry, 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 lesions—the ones on my calves—are 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.

Have 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.

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.

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 raging?

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 worse—punctuated by periods of apparent remission—and 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 especially—and especially when they have been pregnant—have 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 relief.

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 time—or more—parked 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 admired—only a small percentage of time over all, but, on reflection, the only time we choose to consider.

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 life—to 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 being "raging").

The two usually hard and thick lesions in the center of my back are almost unnoticeable by touch.

Lesions elsewhere—navel, groin, sides of midline, chest—are 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 pustular—or 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 ago.

Lesions on buttocks are rough but much improved. I'd put them at 3.5 on the scale.

Lesions on thighs—3.5.

Lesions on calves—4.5 and itching occasionally.

Lesions on ankles and feet—6 and itching the most. Still red and thick.

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.

Of course, 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 imposition.

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 it—not 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 familiar—even 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.

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).

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 ass—and a lost cause—for 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