100% Effected and on Cyclosporine Now
It was good to find your web site and I have
enjoyed being able to laugh at some of your comments. It made
me wonder what my attitude about my psoriasis is. To be honest
with you, I am still really not sure. After 34 years and no
complete remission in all that time, I am past getting upset
about it and have learned to live with it. I've not given up
hope that one day a cure will be found. Since being connected
to the Internet and reading about all the research going on I
do believe in the next few years something wonderful is likely
My P started 34 years ago this month when I emigrated from the
U.K. to Australia to meet up with my boyfriend who came out from
the U.K. 10 months before me. I was a few days short of being
18, did not know anyone else in Australia and all the arrangements
had been made for us to get married in December. About two weeks
after arriving here a small spot started on my forehead and it
just spread and spread. I should add that I did get married
and have happily stayed that way for 34 years next month.
As I have only just found your site, I have probably missed your
reasons for being reluctant to take Methotrexate. I've heard
many others say they would never take such a dangerous drug.
All I can say is that if your P is bad enough and nothing else
works you're likely to come round to try anything.
I started on Methotrexate in 1973 when, believe me, it was not
a popular drug for psoriasis. I had finished having my family
and was a terrible mess, my body was 100% covered with plaque
P. Along the way I lost most of my hair because my scalp was
so badly affected. I had a liver biopsy before I started Methotrexate
and then had 8 more: one each year I was on this medicine.
Unfortunately, the eighth biopsy showed my liver cells changing
and that was the end of the only drug therapy that ever managed
to control my P. I even put up with 8 years of vomiting and
constantly feeling sick but considered it worth it.
Three months after stopping the Methotrexate I was in hospital
with severe psoriatic arthritis (PA). I went to bed one night
with no symptoms and woke the next morning riddled with it.
Obviously the Methotrexate had kept the PA symptoms at bay.
While I was in hospital I began receiving gold injections for
my PA. These work for me and I have been receiving the injections
for 16 years, now, with no side effects..
I then spent years trying other treatments: UVB, UVA (enough
to light up the whole of Sydney, Australia), Imuran, Tigason
(we spell it with an i not an e), Hydrea .... I even had another
go at Methotrexate after yet another liver biopsy showed my liver
cells had returned to normal, but even that didn't work the second
time around. I then started going into hospital with the Dithronal
treatment. This kept me clear the first time for about 1 year,
but then over the next 6 years I stayed clear for progressively
shorter periods of time.
In desperation my skin specialist put me on Cyclosporine, which
I have now been on for 3 years. I was told initially I would
only be on it for a few months, but when they tried to reduce
the dosage I just broke out bad again. Cyclosporine is not perfect
by any means and I am still quite spotty but the spots don't
hurt most of the time and not every new spot turns into a big
spot. Some spots actually disappear. However, this treatment
appears not to work from the neck up. I have also been able
to stop the gold injections as Cyclosporine quiets the psoriatic
I have always told my husband I feel I could write a book on
P. But, for the time being I hope my story reassures you that
cyclosporine is out there for you if other things don't work.
Ed's Response: Your case, Pat, is a strong
indication that change of climate and/or stress associated with
relocation can be strong P triggers. Your case is also humbling
for me and, no doubt, a lot of us here at FlakeHQ.
Your observations regarding reasons not to
take Methotrexate (MTX) also ring true. The drug is only as
odious as your flaking is tolerable. We may all have different
thresholds for embracing the last resort, but when that threshold
is reached, most of us are probably poised for embracing. I
was ready to try anything. Had the rheumy and derm said "cyclosporine,"
I'd be taking it todaybut they said "Methotrexate"
and, so, here I am. And so far, so good. It has not completely
cleared me, but it's only been a few months.
And I am very grateful that cyclosporine is
out there, and awaits me should I need it. Stay in touch, Pat,
and enjoy your Summer in Oz. -Ed
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