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Life Almost Not Worth Living Until...
from Mark B.

Ed:  Glad to find your website — I'm sure you know that most of us attempt to hide our symptoms and it is hard to find or talk to others about this situation.  I commend you for managing this meeting place.  Here is my story to add to the rest.  I'll start from the beginning:

I was 16 years old when I was first diagnosed with psoriasis.  It started from a small scratch on my scalp and moved on from there.  I tried to ignore it for months, pretending that I was normal until I could do so no longer.   I had been prescribed the usual regimen including coal tars, topical steroids, anti-fungal creams, etc. None of them did a damn thing for my problem.  It started to spread and itch so bad that my dermatologist at the time prescribed methotrexate (MTX) at 5 mg per day (orally).  Now this sort of dosage cleared the problem right away but I had no clue at the time exactly how high that dosage was (I'd like to kick that derm around now — he was old school). [Ed Note: MTX for Psoriasis is usually taken once a week.  Mark's total of 35 mgs per week, 5 mgs taken per day, was extraordinary.]  Good thing I only stayed on it for three weeks.  Again, I resumed normal life temporarily.

After stopping MTX my condition resumed its course and began once again to spread on my scalp and face.  Man, what a time to have to deal with that sort of problem — as if I didn’t have enough to deal with as a teenager. Things continued to worsen and I found another dermatologist.  He put me on PUVA and once again things cleared quite nicely.  Once again at the age of 18 I was clear and happy.  I continued PUVA but as time went on, the effects seemed to slip away and I was left in this perilous situation. By that time I was starting to notice swelling of lymph glands on my neck, jaw and armpits.  I had one of them biopsied (they thought it may be mycosis fungoides — symptomatic of a lymphoma — cancer).  At the time I didn’t even realize the implications of this biopsy (I do now), but thankfully that wasn’t it.  Damn them for not explaining it to me.

The next few years were a mess — horribly strong topical steroid (Ultravate).  Yeah it worked but only slowed the progress.  I was starting to totally freak out.  There is nothing so disturbing as a progressive problem that you can do nothing about.  Especially when you are a teenager and ill-equipped to deal with such life problems.

Finally, a dermatologist prescribed cyclosporine and I had some fairly decent results.  Normal life resumed.  I stayed on this medication for about 6 months and then went off.  It was about that time that I realized this route would probably limit my life span to < 50 years and knowing that I would have little choice I was crushed.  I locked myself in my room for days.

Of course, my problem returned stronger than ever.  At this point I had it all over my scalp, face, arms, legs, chest, back and other areas I choose not to mention.  My sanity wavered but I held on.  It was about this time that I found a new dermatologist and he put me on oral MTX again but at a far lower dosage than before.  It slowed the progression remarkably but the side effects were almost intolerable — really nasty GI problems.

I was 22 years old when I started to get arthritis-like problems in my feet. It was at this point that my dermatologist referred me to a rheumatologist. The rheumy changed my medication to weekly IM MTX injections (typical of RA patients) and the effects were almost identical to oral MTX.  Man this drug really KO-ed me.  I would be sick for days after the injections; not able to do anything.  On the other hand, they were slowing the progress.  I stayed that way for almost a year until I had enough.  I told the rheumy that I wanted to cycle to cyclosporine.

This time on cyclosporine I was taking 350 mg per day (yeah I know that’s a lot).  It sure did work though.  I spent almost another year as a normal person (close).  The only problem with this was I knew that if I stayed on this medication indefinitely it would eventually kill me.  So about three months ago I terminated cyclosporine treatments.

This time my condition came back worse than ever.  My skin problem spread without remorse and it felt like it was on fire.  The itching was so bad that I needed to shower 2-3 times a day (my only relief).  Cortisone creams failed to provide any comfort.  My 'arthritis' progressed in my feet until I needed to walk with a cane.  An then I started having GI problems — diarrhea, constipation, bleeding.  It felt like my bones, guts and skin were all set to war against me.  I slept more than 12 hours a day and when I was awake it wasn’t living.  All I could do was lay there and stare at the TV.  I had to quit work.  At this point I decided that I should write my will in case I didn’t make it out of this spell.  I began preparations for my death at 25 years old.  I knew that I didn’t want to die this way and I was prepared to take the action myself.

(You can’t believe how hard this is to write)

And then I talked to my best friend.  I told him the situation.  He talked to his mother.  His mother has a condition called "Celiac disease."  For those who don’t know — celiac is an autoimmune disorder associated with consumption of gluten (wheat) — gluten sensitive enteropathy.  I had never heard of it.  So I did my research.  As it turns out celiac is commonly associated with a condition called DH (dermatitis herpetiformis) and psoriasis.  The medical photo archives of DH and P are strikingly similar. And I thought I had researched enough.

At this time, my rheumatologist put me on prednisone (jeez, another scary drug) and signed me up for phase IV trials of Remicade.  Thank God.  I've spent enough time researching the clinical pathology of autoimmune related dermatitises to know that Remicade is leaps and bounds above what I have taken before.  Also, I prescribed myself a gluten free diet to see what would happen (typical celiac diet).

Two weeks later, I have my life back.  I dropped the cane — my feet are 100%.  My guts seemed to disappear into my abdomen as if they were a normally functioning part of my body (no more problems).  My skin has stabilized and the itching is in control.  I can’t sleep more than 8 hours.

I'm not depressed anymore (I'm still a negative irritable prick, but that’s nothing new).  The thing that really makes me wonder now is — could the prednisone have turned things around this quickly?  From what I'm reading it is highly unlikely that it would improve my situation so rapidly.

So I start my first Remicade treatment on Tuesday.  It may as well be a damn trip to Disneyland in my eyes.  Doesn’t really matter what the cause of my problem is at the moment.  First priority is go get that drug into my blood. It should earn me at least six months if not a year of normal life.  Except — this time I'm not going to pretend that I'm a normal guy and forget about all this.  As soon as I can get my life back in control I'm going to get some tests done that I should have done years ago.  First, a skin biopsy.  You know, I've never actually been diagnosed by any other means but visual identification.  Stupid thing is that there are conditions out there that manifest themselves in similar ways.  Second, get a GI specialist to take a look at my guts.  I don’t know if they'll find anything now because things are better.  I don’t really trust the medical profession anymore.  I guess I'll just have to take charge of this situation and tell them what I want.

On the brighter side, I'm getting married in August to the woman I love.  I have such a drive inside to live and a brightness in my heart.  I keep on thinking about having children one day and really all I can wish for is another 20 years.  I just want to live long enough to see my children to adults (when I have them).  Jeez, there’s nothing like seeing the reaper to remind you that you are mortal.

(I feel for my family - this has got to hurt them too.)

I don’t want to live the rest of my life in pain.  I wont let that happen.  I've spent so much time looking for a treatment that I never bothered to look for the cause.  Maybe I'm wrong and this is just the way it is.  All I know is that I'm prepared now to deal with either outcome. -Mark B.

*****

Ed’s Response:  Thanks, Mark, for this eloquent and heartfelt recounting of your life (so far) with our shared demon.  Reading this brought tears to my eyes because, shortly after I was first diagnosed and when my P really exploded, in my more cogent moments I thanked God I did not have this when I was your age.  I feel sorry enough for myself now, but I am humbled to my knees by situations like yours.  There is another thought, though, that always follows my thanks to God for being spared this in my youth, and that is this:  If I had been through at your age what I did not have to go through until my forties, I would be a better man today (a few weeks from 50).  You do not take your health for granted, which  also means to me that you purposefully appreciate life and do not take it for granted, either.  When I was your age I possessed no such wisdom and, in my naiveté, I wasted so much time.  I don’t want this sentiment to be mistaken as a religious joys of suffering narcissism.  I do not believe that P at any age is something about which to be thankful.  But I have learned a great many things about being a better person subsequent to this affliction.

Congratulations on your upcoming marriage.  (Talking about things that change our lives!)  One thing this is certain to do is re-focus a lot of your mental energy away from what ails you.  Do wish for more than another 20 years, Mark!  Do not forget our knowledge base as a species grows exponentially, and the medicine that has left you wanting so far is constantly evolving.  Even if there were no advancements, you sound like the kind of person who will keep exploring and will most likely discover your own route to better skin and bones.  I have confidence there will be major breakthroughs in P treatments within the next two decades — even in the next decade.  And those children you look forward to having?  Chances are good P will never be the threat to them it has been to you and the rest of us at FlakeHQ.

Now that you’ve found us, Mark, I hope you’ll stay in touch.  -Ed

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