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Sure about Soriatane
Hi Ed, I just found
your website because I have been searching for "unbiased"
information about Soriatane.
I have had Psoriasis
all my life and I am now 30. For
the last two years I have been in PUVA therapy with incredible results and
stability — until recently. In
June, I broke out after I was burned by the PUVA treatment.
The dermatologist cut me off and prescribed a
"Texas-sized" portion of a steroid cream in a large jar. The
cream did not seem to help and apparently I overdosed. I then tried PUVA
The nurses were
freaked out and looked confused. They went on to do the treatment and
later that night the redness subsided. The nurses wanted me to wait a week
to see what happens. So, during that week I began to get itchy and flaky.
I then became frustrated with my skin and decided to sit outside in
the hot sun for 20 minutes. This
helped dramatically! Later that evening my skin had no redness, no
flaking, and no itching.
This lasted for a few
days then the redness came back all in the same areas where I applied the
steroid cream. The derm and
nurses saw my skin again and they were baffled because my skin would be
good one day, then red the next.
Also, during this time my right ankle had swollen some and stayed
slightly swollen during the day and the swelling went down in bed.
Finally, they decided to do a biopsy. The results came back with "A Guess" — that I have Pityriasis Rubra Pilaris or PRP. Also, note, the biopsy was done right after my PUVA when my skin was red. They said the only choice I have now is to try Soriatane. I have been reading a lot about the side-effects and other feedback from other patients thinking about Soriatane or currently using it.
My feeling is that
Soriatane is a last resort-type of treatment.
In my opinion, my skin does not feel that bad nor does it very much
bother me, so to now take something new that has side effects seems flat
out insane! I am getting the impression that the drug company is pushing
Soriatane and the Dermatologist is pushing Soriatane onto the patient.
I am extremely leery of something that stays in your system for at
least 3 years, can cause hair-loss, headaches, dry-lips, raises
triglycerides, and raises cholesterol.
Not to mention they suggest not having a drink.
Well, I certainly like to have a glass of red wine each night, it
settles me down and gives me a goodnight’s rest.
I am just very paranoid about Soriatane, especially since my skin
was extremely clear for over 2 years.
Very Best Regards, -Jeffrey M.
Welcome aboard, Jeffrey.
I hope you read I Have Pityriasis
Rubra Pilaris in the archives. Bill
D., the author, was told PRP has an average run of about 2 years.
If that’s a fact, and I wasn’t debilitated by the condition,
I’d think twice about launching a systemic regimen, too.
Sometimes Derms tend to lay out regimens in a spectrum of “safe
and easy” to “dangerous,” as though it were a long-term business
strategy that we’re going to work through until we find a way to stop
the lesions. The goal is to stop the lesions — kind of like the mission
statement behind the business strategy.
But it isn’t that simple, is it, Jeffrey?
While we are making
our way along the strategy-of-regimens life goes on.
Whether or not our P improves, life goes on.
For many of us, our anxieties, expectations, levels of
disappointment and general attitude about things tend to change.
I’ve seen this happen over and over again in the repeat
correspondence I receive from some FlakeHQers. It happened to me. What
makes me the happiest, of course, is when I sense high anxiety changing
into something gentler. So
many people first came here with a sense that P was ruining them, their
lives. Then, as the months and
years rolled by, they learned that wasn’t so.
Things had changed, but the cup that contains our potential for joy
and fulfillment doesn’t spring leaks or become any less accessible
because we flake.
When we happen to be
among the lucky ones who change for the better emotionally
over time, the strategy-of-regimens that runs from “safe and easy” to
“dangerous” stops making sense. But
our derms don’t know that unless we tell them.
The people at Roche do
seem to be laying things on a bit thick re Soriatane.
Their Psoria-sense.com web enterprise (a.k.a. Soriatane.com)
appears to be something you join in order to get information readily
available elsewhere plus super-doses of plugs for soriatane.
I suppose in our current culture of drug and healthcare
merchandising we can’t blame them. Peddlers
of the traditional systemics — of which Soriatane just happens to be a
recent entrant [a replacement for Tegison], though still “traditional”
pharmacology) — peddlers of stuff like this have reason to fear the
coming biologics. If half of
what we’re hearing is coming true in the various stages of FDA trials
now underway and nearing conclusion, liver petrifying, kidney mortifying
immunosuppressive drugs like methotrexate, cyclosporine and soriatane (the
napalms of current warfare against flaking) may be fond memories among
flakers by the time our new century enters its teens.
Not only might we be flake free, we might be safely
flake free. Wouldn’t that be
Of course, PRP is a
different kettle of fish. I
hope what Bill D. says works out and that at most you’ll have a couple
of dozen uncomfortable months. Let
us know how things fare and don’t let anybody chart your course for you.