Mike Bailin

 Cyberflaker

 Interviewed by Ed Dewke
in May-June 2007

Ed:  Mike Bailin was born in the 40s in New York.  He was out of high school and into the work force by the time he was seventeen and shortly thereafter acquired a position with the U.S. Patent Office in Washington, D.C.  He claims to have lived at a famous address:  “the historic corner of East Capitol and 2nd — the Library of Congress on one corner, the Supreme Court on another, Folger Shakespeare Library on the third, and Mary Dobbins' rooming house on the 4^th” (he lived in the rooming house).  During his time in D.C., Bailin took college courses, learned a lot on the job about patent law, and also worked a short time as a prison guard.  “When I left the prison guard job after six months (bored as hell with it) I actually walked away with some performance commendations on my record.  Despite legends (or maybe actual truth some places), they put far more value in good judgment than in kicking butt.” 

In ’71, Bailin moved to Canada.  There was an influx of young American men moving to Canada around that time to avoid being drafted into the Viet Nam “conflict.”  But that wasn’t Bailin’s reason.  He’d already obtained a medical deferment for his psoriasis.  “The specific impetus was tax delinquency — I suddenly found all my checks bouncing because the IRS had lovingly seized my bank account.  So using a handy guidebook put together by the Quakers, I applied for immigration up here, and was accepted primarily because I had a written job offer from a patent law firm in Toronto.

“I'm still a U.S. citizen after 35-plus years up here, but I'll probably finally give in on that one and become Canadian.  The new photo-ID card for permanent non-citizen residents is a nifty idea (I've still got my tattered old folded-up landing certificate that at least for the moment can still be used for cross-border travel by car), but it's MUCH easier (and cheaper) to get citizenship than one of those.  And given the socialized medicine system nearly everywhere up here, I don't foresee returning to the U.S. except on visits.”

Fortunately for most of us who flake, the Internet has helped diminish the constriction of international borders, and Mike Bailin is a regular presence in our flaking cyber-world, including FlakeHQ and PsorChat.  A list of links to Mike’s contributions here can be found at the end of this interview.  -Ed

*****

Ed:  Please give us some background on your own case of psoriasis.  How long have you had it?  How did it first manifest?  Was it diagnosed quickly or the opposite?  What have you used to manage it?  How successful is your management of it these days? 

Mike B:  I had almost the classic history, first noticeable at puberty, more or less (I'm early 60's now), on my elbows and knees, plus some "dandruff" not too long afterwards.  Back in the early days (say into my early 20's), because there was so little area involved plus essentially no itch, I didn't bother with any kind of treatment at all, and since I wasn't much of a "social animal" (always tended to be a loner) I didn't even bother covering up.

No medical attention, even for firm diagnosis, until quite a bit later, and that was simply to satisfy employers that it wasn't a contagious condition hazardous to co-workers.  There was always an awareness that psoriasis and other skin problems ran in the family.  Odd pattern in my own family, most commonly passed from grandparent to grandchild with the "skipped" generations typically suffering from eczema or similar problems.

Oh, interesting story about one of those diagnosis visits.  At the time I was living and working in the Washington D.C. area, and the derm I was sent to see was very unhappy.  She did point out that minor pits in my fingernails were almost a dead-giveaway for diagnosis.  And then she said "I'm sure I must be a disgrace to my profession — but I haven't a clue how to treat it."  I had to reassure her that I wasn't (at that time) looking for treatment, just a confirmed professional diagnosis.

Over the years I've on rare occasions played with that "heartbreak of psoriasis" OTC stuff (most often the shampoo), with essentially no improvement, but I've handled it mostly with heavy moisturizing (usually Vaseline), both to restore flex in areas that need it and also to help prevent cracking.  Plus, as I've commented both here (FlakeHQ) and over at PsorChat, in my particular case leaving it soak in for several hours until essentially dry again does a surprising job of promoting easily-removed flakes. 

About the only addition in recent years has been the use of topical cortisone ointment when needed for relief of itch-discomfort.  A couple of visits back to my current derm, we agreed that if that was the only benefit I was getting from it, we might as well shift to a milder version to reduce the likelihood of long-term problems.

Only two areas with which I have problems, and each are practically whole stories in themselves.  Patches on the backs of my lower legs are what's most recently (after years of alternate ideas) been diagnosed as psoreczema, and are very raw and itchy, so that's where the bulk of the cortisone typically goes.

And the bottoms of my feet, particularly under my heels, have extremely thick and heavy plaque build up, probably hundreds of layers, which doesn't respond to soaking at all.  My highly unscientific approach makes my derms cringe (when I've let them know, of course): I carve off what I can with a small serrated knife.  Someone else doing it for me could see better and probably get a better angle on the knife, but of course they won't — plus I can feel if I'm getting too close to live tissue, which they can't.  It sure is a delight to actually be able to feel the floor under my bare feet again, even if only for a few days. 

I'd always assumed that the buildup under my heels, and to a lesser extent the rest of my feet, was simply years of accumulated callus, since I've always preferred to go around barefoot at home.  During my hospitalizations for erythrodermic psoriasis, years of psoriasis build-up on the bottoms of my feet cracked.  I'm not sure if the cracks were caused by the erythro flares, or the treatment, or both or neither.  Anyway, those large cracks opened almost the entire length of my feet, from the back of the heel to just behind the toes.

I conned my wife into helping me enlarge this crack with a pair of thin barber-style scissors, and at that point we were able to peel the whole thing off in almost one piece, like some kind of monstrous sock.  Getting it over the toes was very uncomfortable, borderline-painful, but the results were amazing.  It was many weeks before I got even a hint of fresh scaling there. 

But the usual foot treatment involves working on the thickest chunks with the serrated knife.  What the heck, while I get uneven chunks off, it does (for a while) encourage new semi-loose edges that I can play with.

Ed:  Tell us more about your experience with erythrodermic psoriasis.  Why is it life-threatening?

Mike B: I've had erythro flare ups that put me in the hospital twice, about 12 years apart, and probably had it a third time without hospitalization.  To answer your last question first, erythrodermic flare is dangerous essentially because it's an extreme case of the increased blood-flow and heat-retention thing which is typical of psoriasis, and is essentially a "borderline" full-body fever that could easily become life-threatening.  As of the last time I asked, there seemed to be general agreement, even flat statements, that no one knows what gets them going.  But it's not unreasonable to guess that it could be an overkill situation of the things that normally aggravate psoriasis for any given individual, maybe too many and/or too strong all hitting at the same time.  I do know that in my own case, one of the most severe aggravating factors is usually stress, and I had an almost-erythro flare up some years back when we found the hard way that I'd acquired a new allergic reaction to penicillin.

The scariest part of my first erythro flare was the total mystery of it.  My psoriasis hadn’t been particularly uncomfortable; this was.  It seemed something entirely different than my psoriasis.  Even my family doc was baffled at first, and tried working on the assumption that it was contact dermatitis.  One approach he tried was interesting: oral cortisone — didn't help the condition any, but it was amazing how many almost unconsciously tiny aches and pains it cleared up while I was on it.

Finally he gave up and referred me to a local derm, who impressed the heck out of me because his questions proved he knew something about psoriasis (e.g., "Do you frequently feel chilled?").  And while I can't remember if he mentioned (or maybe I just didn't understand) erythro, he made it clear that my psoriasis had reached a state where he needed to request a hospital bed for me on a crash-priority basis.  He sent me home, and I got a call from the hospital 3 or 4 days later telling me to come in and what clothing to bring (mostly throw-aways, because the coal-tar treatments were sure to ruin whatever I wore).

I don't remember much about the hospital that first time, other than dermatology had a small wing to itself in the basement and it was fascinating and a major uplift to meet others like myself there, many of whom were in worse shape (visually, at least).  I was there for about 3 weeks, and the last week or so of that was essentially waiting for the doc to decide I was definitely OK to leave.

The second time around I at least got some early-warning signs a week or so before — new growth in lesions, faster than I could encourage it to flake, plus itching and a burning sensation.  So I warned my boss (same one as from 12 years before) that there was a possibility I was getting into a bad one again.  And less than a week later, I called my doc, who this time didn't fool around and got me an immediate referral to a new derm (old one was no longer around), who took the same approach as before.

I'm not sure what treatment I got right at the start either time, but in both cases there was definitely major relief of discomfort within the first 24 hours.  Same hospital, and much more freedom to move around this time, or maybe I was just less terrified of the unknown and able to enjoy freedoms that were already there.  It took forever (over a month) to break the erythro this time, mainly because of pressures from my boss who insisted I “cooperate” by phoning in twice a day.  I was the computer wiz at work, among many other things, and my boss was almost totally comp-illiterate, so I spent much time trying to figure out how to talk him through repairing his own disasters.  Finally after one bad session on the phone with him I nearly broke down, told the nurses, “I’ve gotta get out of here and back to work.”  After a meeting between myself, an in-house counselor, and the doc and other medical staff, it was agreed that my boss seemed to be the main problem in breaking my erythro.  So he was blocked from contact (calls were intercepted and redirected wherever) and they tried miserable cold wraps on me, and that finally did the trick.

As for avoiding it in future, good question, since no one's sure what triggers it in the first place.  Since I know stress is a major aggravating factor for me, all I can try to do is try to keep that manageable — slightly easier these days, since I'm disabled-retired and mostly live on the computer.

Ed:  What’s it like to obtain medical treatment for your P in Kitchener, Ont., Canada? 

Mike B:  This city has had its ups and downs, mainly because of major changes in both policies and funding over the years at both the federal and provincial levels.  Overall I'm in favor of the [nationalized health care] system — one of the biggest advantages, naturally, is the individual not having to worry about finding the money for doctors' visits, hospitalization, or (most) lab work.  On the negative side, while at both times I was hospitalized there were excellent specialists here plus a top-notch hospital derm unit, we're currently undergoing a staffing crisis so that many areas (particularly derm) have severe shortages of specialists and even family docs, and I believe that marvelous in-patient derm unit no longer exists.  And I’m told our local "main" ER apparently doesn't even have any derm contacts.

Part of the problem is a conflict between the federal and provincial governments about accepting docs from overseas.  If a world-renowned specialist in almost any field wants to come to Canada, Immigration will delightedly welcome him with open arms.  But the province, which looks after licensing, may very well want him to go back to medical school here almost from scratch to meet “our standards,” and many potential immigrants will understandably think long and hard and quite likely decide to make some other country their new home.

Ed:  You have been participating for a long time in a number of online forums, including PsorChat, and over the years your posts have helped us contrive an image of Mike Bailin as a psoriatic who has experienced much and come out mellowed on this end.  Despite the nearly life-threatening erythrodermic psoriasis bouts, you consistently downplay any stigmatizing effect our disease may have on your life.  Has that always been the case?  Was there a time where psoriasis controlled you?  You survived an injury that left you brain-damaged.  Does P take a backseat to the complications arising from that?

Mike B:  No question about it, I've always felt that for me, 99-plus percent of the time my psoriasis has been worse to look at than to have.  And I wouldn't even categorize those erythro experiences as traumatic, because I didn't really understand the crisis (other than extreme discomfort) until long afterwards.  The second hospital stay, in particular, was deliberately structured as a get-away-from-it-all, almost a vacation.  The hospital was overall designed for long-term rehab, started out life in ancient history as a TB “asylum” — no ER (big warning sign to that effect over the front door), and the majority of residents other than in the derm unit literally lived there.

There was a big lounge on the first floor, “Sam's Bar,” where we'd get together for coffee twice a day, sing-alongs one or two evenings a week, or just drop in and see who was there the rest of the time.  And they managed to get the provincial government to make an exception for them back when the first hospital-smoking crackdowns came elsewhere.  Not only was smoking permitted in the lounge, but there were even notices posted that if smoking bothered you, please go elsewhere.

There's been, to the best of my memory, only two occasions where I've been in situations that were unsettling, if not exactly traumatic, and they both involved relating to other people.  One involved a new girlfriend — things had started getting mildly intimate, and she suddenly asked “What's that?”  When I told her, she said she was afraid she might turn out to be allergic to the flakes (a possibility, I'll admit, even if probably extremely remote) and she'd ask her tea-leaf reader (?!) for advice.  Never did hear from her again. Oh well.

The other one was after my head injury and indirectly related to it, and could have made front-page headlines.  By way of background, my head-injury hospital sent out an outreach worker to help me find ways to become at least somewhat socially active again.  I love playing cribbage, and one of the local seniors' centers has games twice a week, so they struck a deal to waive the minimum age for membership in my case since I was retired anyway (and only 3 or 4 years shy of their minimum).  So I quite happily went twice a week for a couple of months.  Then on one visit, when I arrived I was pulled aside by a manager and told there had been complaints from other players about my appearance, and please don't go into the room.  I tried to explain about psoriasis, and in particular that it was definitely not contagious or anything like that, but he didn't want to listen, so I dejectedly turned around and came back home.

A few years later I phoned the city's parks and rec office (the overseeing office) and, more out of curiosity than anything else, asked if the situation had ever been resolved.  The girl said she couldn't find a pertinent open file, but she'd check and get back to me.

Obviously someone there must have had the brains to recognize a major situation, and kicked my inquiry all the way “upstairs.”  A couple of days later I got a call from none other than the chairman of the city's executive board, profusely apologizing and thanking me for not making a formal complaint to the provincial human rights commission.  He agreed that, had I done so, it would have been an open-and-shut case against them.  And more seriously, he recognized that the city would likely no longer exist — the penalty for that kind of thing is per-day of the offense, and since it was still essentially unresolved after five years, the city probably would have been bankrupted and had to be absorbed into one of the other cities here.

And yes, my head injury definitely had a much greater effect on my life.  Between lifestyle and personality changes, for all practical purposes the “old me” died back then.  It's quite common, in head injury groups where I'm active, to believe that part of proper rehab is to be able to properly mourn the old self and carry on, and quite a few even take it one step further, treating the injury as a new birth date.

I won't get too much here into the injury and what it did to my life — if anyone's interested, my story's at TBI-Home (formerly TBI-Chat), at http://tbihome.org/stories/mike_b2.htm .  Oh, and for "outsiders", TBI is the acronym for “traumatic brain injury.”

Ed:  I recall you mentioning before that you found a an alternative treatment possibility in your dog.  What am I recollecting? 

Mike B:  My pet chitzu is determined that my legs (all he can reach, unless I'm lying down) look wrong and he's gotta make 'em better.  So he'll get himself comfy and lick at the plaque until it becomes transparent, more or less disappears, and he's satisfied he's been successful.  And of course off for a hasty drink if he's picked up any loose flakes in the process.

Who knows, maybe one of these years we'll rock medical science back on its heels and find that chitzu saliva really is a topical cure for psoriasis. Seriously, though, it really is surprisingly soothing to those psor-eczema patches on my legs, to the point where I can actually skip or at least put off using the cortisone afterwards.

Ed:  I know you were a trial participant for an early version of Raptiva.  Tell us about that experience.  And did it completely cool you towards biologics?

Mike B:  That was certainly an interesting experience.  Earlier (with the same doc) I'd been in the Phase 3 work on Sandimmune specifically for psoriasis, as contrasted with its existing approval strictly as a general immuno-suppressant.  And the doc said that because my psoriasis was so stubborn and generally resistant, even if “severe” only in the sense of coverage area, he considered me his number-one choice for any new projects coming along.  So along came what was originally called anti-CD11a, now Raptiva.

In the beginning, anti-CD11a very often created extremely severe headaches, but my doc applied for me anyway.  This was after my head injury, by the way, and was one of the extremely few times that the two problems overlapped.

He told me that the manufacturer had rejected me "because of your head injury".  I kidded him for ages afterwards that it wasn't clear whether they meant:

(a) the drug could put me at risk, possibly of additional damage;

(b) most likely — they were afraid I'd throw their headache-incidence stats out of whack; or

(c) they weren't convinced I was mentally competent to sign the agreement and release form.

They later found that by using a half-strength starter dose, subsequent doses could be pretty much as strong as desired with virtually no risk of headaches.  So at that point I was accepted into the program.

And the stuff was incredible — not fast, but when it finally got going it cleared me up much better than any single med I'd ever been on before.  And no problems (for me) with side effects, either.  Apparently the most common side effect was hypertension, so that got checked every visit — and despite being somewhat overweight, generally a pretty sedentary lifestyle, and a fairly heavy smoker to boot, I typically “clocked in” at around 105/65.  The doc said he'd only seen that once before in all his years of practice, and both times he was totally baffled.  But as he put it, “As long as it stays that way, enjoy!”

The problems came after terminating treatment but while still in the “official” post-treatment observation stage.  Fairly severe flare-up, which at first (till Genentech had accumulated more data) the doc insisted couldn't possibly be related to the med, more likely from too much sun or whatever.  The coverage was extensive enough to qualify me for the extended-treatment phase, which simply put me back on the med for a few more weeks but did a fair job of clearing it up.

My head injury had wreaked havoc with my eye-hand coordination, so I opted out of giving myself the injections.  Instead, I went into the office for the shots.

One problem I did run into was skin ulcers on the outsides of my feet, mercifully one foot at a time.  Typically they needed bandaged for many weeks before they'd suddenly heal, and if I was lucky I'd get a few months break till the next one started up.  I couldn't go out at all, since I couldn't possibly get shoes on (and had trouble enough just with jeans), so naturally I was stir crazy — thank heaven for the Internet.

My wife, who was seeing the same derm, raised hell with him since we hadn't a clue how much longer this would go on.  So he phoned Genentech and let her speak to someone there. The rep there said that all known effects were out of the system after 7 months maximum, my case definitely sounded like a skin problem rather than underlying infection or circulatory problem, and (most interesting of all) they had no record of such a problem with anyone.  Meaning, of course, the derm had taken it upon himself to choose not to report it even though the first one was while I was still in the observation phase — and that is NOT how proper research is done.  It's their job, not his, to determine whether something is significant or not — even one lone case might justify an “... in extremely rare cases ...” notation in the literature.  So that was the end of my relationship with him.

And yes, I'd be highly reluctant to try another biologic.  Partly because of my bad experience with the self-styled “expert,” of course, but also because I'm well aware that there's at least as much trial and error using them as with any other form of treatment, often with much more serious side- and after-effects.

Ed:  What biologics do flakers have available to them in Canada?

Mike B:  As far as I know, we've got more or less the same ones here as in the U.S.  Outrageously expensive, of course, but hopefully that'll improve once (a) R&D costs are recovered, and (b) they become more widely known and accepted and are produced in larger volumes. 

Ed:  What is “psor-eczema”?  (It sounds like a doctor’s indecisive diagnosis.)

Mike B:  This was an unhesitant diagnosis or label, take your pick, from my current derm for a condition I've had for quite a few years on patches on the backs of my lower legs.  Typically I'll get what seems like normal scaling but which won't come off clean, leaves a bleeder underneath no matter how gently I've encouraged it.

I've asked many docs about this over the years, with all kinds of different responses.  Last time I was in the hospital I showed it to the house physician (not a derm, by the way), and he said he thought it was a capillary or other small blood vessel too close to the surface and I should ask my family doc to have it cauterized.

Back when I was seeing the researcher-derm, he commented aloud that he really should get a biopsy, but never did that.

I related that to the next derm (immediate predecessor to my current one), and he said he could do a biopsy if I really insisted, but he was convinced it would show nothing more than psoriasis.  No explanation or even conjecture about the bleeding and rawness.

By the time I got to my current derm, it was (and is) at a stage where it's extremely itchy.  And any kind of scratching, whether for the itch or in desperation to remove whatever after moisturizers have soaked in, strongly aggravates the itch. Actually any kind of stimulation of the area, such as rubbing in meds, has the same effect.  Oddly, soreness from scratching it raw only reaches awareness hours afterwards.  So that's where the vast majority of my itch-relief topical cortisone goes these days.

I get the impression that pain and itch nerve impulses are somehow getting garbled, and have sometimes wondered whether my head injury was somehow involved.  But the rest of me — other than those two patches — follow the more common pattern of pain followed later by “healing itch,” so it seems unlikely.

When I showed it to him, and described its behavior, it got a distinct “Aha!” (almost “Eureka!”) reaction from him.  I missed (or couldn't remember) then what he called it, but he was kind enough to write it down on my next visit, and commented that I probably wouldn't be able to find much about it, on the internet or elsewhere, except in highly esoteric medical journals.

And sure enough, I couldn't find a darned thing about psoreczema with Google, with or without the hyphen.  Nothing on the NPF site either, so I dropped a line to their contact-us addy asking if they could steer me to more info.  I got a very nice reply from a woman there, explaining that it was essentially psoriasis plus eczema, and the reason I wouldn't find much was because the profession was still hotly debating whether it was “merely” a combination of the two conditions, or if there was some kind of “catalytic” (for want of a better word) effect which justified viewing it as a totally different and separate condition on its own.  She also suggested I contact the eczema people for more info at that end, but the answer I got there was that they'd never heard of it.

My own inference, from the little info I was able to get, is that the reason I can't get neat flaking is because the skin underneath isn't “clean.”  Or maybe the eczema is mixed right in with the psoriasis, rather than underlying it, so that the scaling itself isn't what I'm used to elsewhere.

 

Ed:  What are your thoughts on alternative therapies for treating P (e.g., diets, supplements, climatotherapy)? 

Mike B:  I've never really looked at any of those, probably because most of the time I can cope with my psoriasis comfortably.  Oops, try another word — satisfactorily?  I guess I view them pretty much the same way as I do acupuncture, especially back in the old cure-all heyday of the latter — as open-minded as possible, but somewhat skeptical.

Ed:  As always, Mike, “texting” with you has been a joy.  It would seem that some of the “breaks” life has tossed you would give you every excuse in the world to be a maladapted flaker, but you have been since the beginning of my association with you, and remain, one of the most “adapted-sounding” flakers I know.  (And I’m even surprised I can say that after reading about how you peeled the skin off your feet as though it were a sock!)  If I could, I’d close this interview with a chorus of the Roy Rogers Dale Evans’ favorite, “Happy Trails to You!”

*****

From the Archives:
Mike B’s Correspondence at FlakeHQ.com

 2002
March:  Severe Relapse After AntiCD11a (Xanelim) Trial 
May:  Turned Down for AntiCD11a Trial:  Old Head Injury?
July:  P Statistics and a Sole Story 

2003
January:  Responding to Tonsillectomy and Penicillin Allergy
March:  On Crys B.’s Lonely 20 Year Vigil
July:  DLQI Could Shed Light On Depression Among Flakers

2005
September:  International Resources for Non-U.S. Flakers
November:  Flake: Confessions Triggers Old memories

2006
January:  Derms in Canada and Raptiva Side Effects
March:  On Sheri Decker Interview and Other Matters
May:  Scratching Until It Hurts
November:  Why Erythrodermic P Can Be Fatal

Mike Bailin is happy to receive email at:
[email protected]

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