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Almost Not Worth Living Until...
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:
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.
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.
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.
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.
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.
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.
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.
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.
can’t believe how hard this is to write)
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.
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
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.
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
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.
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.
feel for my family - this has got to hurt them too.)
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.
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
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