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Sufferer Has Rare Reaction to Soriatane
I am a fellow flaker and I have ITP (idiopathic
thrombocytopenia purpera) which is also an autoimmune beast.
I would be very interested to know if any other P sufferers who
used Soriatane had a platelet disaster.
I was on
Soriatane for about 5 months and it did well for my P.
However, I had some rather nasty side effects that occurred
suddenly. I had considerable
joint pain, but thought it was the 50 year old body starting to show its
age. The joint pain is pretty
much gone since I stopped Soriatane. My
nails all crumbled rather suddenly and I lost about 1/3 to 1/2 of my hair
VERY suddenly! My nails have
come back (I suggest gelatin capsules to help with this) and my hair is
coming back finally. However,
the new hair is very kinky. My
old hair is straight. It is a
very interesting combo.
Now to the big
problem. ITP is basically an
autoimmune disease where one's body recognizes its own platelets as
enemies and destroys them. Most
of this action occurs in the spleen.
About 25 years
ago I was diagnosed and had my spleen removed.
I have been in remission ever since.
My platelet count runs about 100 consistently.
Normal is about 250+. After
my Soriatane treatment it was discovered that I am no longer in remission.
My last count was 63 and steadily declining.
The treatment options are very unpleasant and not always
successful. I am in a quandary
because I wonder if my nails came back and my hair came back, could my
platelet count come up on its own?
I really don't
want to knee jerk react by dumping Rituxin or steroids into the mix if my
body is going to come around on its own.
Roche and my
derm kept sending me back and forth, each telling me that the other could
answer my questions about all of this.
It was a game of hot potato. Finally,
my pharmacist requested the info and it is "in the mail."
The package insert does not address the platelet issue, but the PDR
I would be
interested to hear from anyone with ITP who has been on Soriatane, or
anyone who had a platelet drop while on Soriatane. I would also urge any
ITP patients to talk seriously with their hematologist before starting a
course of Soriatane.
My P returned as bad as ever within a week or two after stopping
Response: It is we who need to
thank YOU, Pam. Your kind of
rare but significant reaction to a drug as popular as Soriatane is
something we don’t often hear about but need to.
So thank YOU for sharing.
have no information that would help end the game of “hot
potato” you’re experiencing. Hopefully
other readers may have something to contribute.
please do let us know what you learn and how things progress.
We are wishing you the best. What
you’re going through is awful. -Ed