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“Chin Up” for Ed
Dear Ed, I sure
was sad to read your news. I
haven't heard many good reports about folks doing Enbrel for P.
My doc tells me many of his P patients have gotten "their
lives back"... sooooo ... I sure would like to meet these people.
I've been seeing this derm for many moons (and his reputation is
outstanding in my Maine community) so I best trust what he is saying to be
true. No progress so far after
3 injections and I have some fear of course of the side effects of Enbrel.
It sounds like your T-cell count was very low due to Enbrel?
I am wondering
about Amevive myself.
I don't seem to
have PA. Not definite but
pretty sure from what the rheumatologist said by seeing me.
I don't have swelling of the joints. I
think I have some knee joint pain just from being 52 this year.
Most of my friends that age or younger have that.
I have arthritis in my neck which really limits my walking and
hence I have put on a few pounds. I
also eat over my feelings of not having control over the amount of pain I
have from P.
I am so sorry
you have been going through so much. I
did go on my first message board and it seemed to help my confidence build
and not care so much what others think.
I wore shorts for the first time in a year yesterday so yeah for
I look forward
to hearing from you again and send my hopes to you for remission.
Do your very
best to know it's ok to have your skin broken out and that your P isn't
all that you are — and enjoy yourself at the wedding [in Seattle in
Response: Thanks for the words
of encouragement, Julie. My P
doesn't affect my overall enthusiasm for life.
With 7 grandchildren — all within arm's reach — I can't help
but feel I'm growing younger! (I'm
waiting for the day — though not "eagerly" — when one of
them asks me to come to school with him/her for show-and-tell about
only the eldest of the seven has signs of the disease and, so far —
knock on wood — it's a small patch on her scalp hidden by otherwise
beautiful blonde hair.)
docs are not blaming the low lymphocyte count on the Enbrel.
They are blaming it predominantly on the 28 days of radiation
therapy I undertook Mar-Apr of '03. They
zapped my pelvic area (after surgery for testicular cancer ... all quite
successful) and said this would destroy (for awhile) the ability of my
bone marrow in the area to create blood cells.
As far as I know, my lymphocyte count was never checked before,
during or after the Enbrel (weird, it seems to me in retrospect) so we
don't know about its effect.
Like you, I've
been baffled by the wide yin/yang of flakers' reactions to the biologics.
Some have "gotten their lives back," others, like me,
have been unaffected. I think
there's a hint about this diverse response in new discoveries about the
genetics of P. So far they've
identified 9 (?) genes as having an effect on psoriasis.
Not all flakers display all the genetic "markers,"
meaning there are assorted combinations of the functions of these genes
that all seem to result in P. The
mathematical combinations derived from 9 genes turned "on" or
"off" in all their possible combinations is staggering.
And we've no good idea (as far as I've read) about combinations
that do or don't cause P. No
wonder we have so many different triggers!
No wonder — I think — some of us respond well to a particular
medicine while others may be unaffected by it!
Anyway, I've found it better to be fascinated than despondent! -Ed