Hello, my name is jessica and I
have lupis anticoagulant. I take coumadin
for it and I hate that medication. Hate
it! I can't do anything on it. And i'm
like a walking disaster. When I first
started taking it I wasn't allowed to get
jobs at returants for fear that I would
accidentally cut my self and bleed to
death. Everytime I ask my doctor if I can
get a new pericing or a tatto, well, at
first he laughs at me, then he says tell
me on when you know you're getting it.
And I have to go on heperin needles for
like a week and my insurance doesn't cover
it so I ahev to pay 30 some dollars per
needle. And I have to give it to my self
in the leg. I also know that if I ever
get a blood clot that have to load me up
on this junk and if that doesn't work,
then I die from it! How horrible is
that?! So I just have to wait to die. I
want to be an actress one day. I can't
just up and die. I also didn't start
getting the symptoms until one year after
I was taking the med. I get headaches and
joint pains all of the time. I hate this
medicine. I'm sick of having this
disease. Though my doctor does tell me
that they are trying to invent a new
medicatio that is 10,000 times easier to
deal with than coumadin. I'm happy about
that, but how long do I have to wait for
it. And, if I start eating right
(veggies, which I can't really have too
much of) it might turn its self around and
dissapear. But if I can't have greens how
is that going to happen?
Anyone who feels the same way?
- j.M.Griffin
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julessansom
New User, Becoming EHEALTHy
Joined: 03 Nov 2006 Posts: 1
Lupis Anticoagulant Posted: 11-03-06 22:28pm
Yes jessica I can relate to what you are
experiencing. I also am taking coumadin
and it is very frustrating. But from
what I understand it is also likely saving
my life. I take it for a different
reason, I am not sure exactly what lupis
anticoagulant is (a disease?).
I take it due to a severe family history
of blood clots and I myself have had
clots. Also, I have factor v lei-den (a
genetic blood clotting disorder) along
with factor viii, and some possible other
factors.
In addition to getting blood clots
easily,and I am told that any bump that
may appear out of nowhere on my body is
an emergency and I need to go straight to
the er. This gets really old, really
quickly.
Weekly my inr (a simple blood test) is
checked to make sure I am in a therapeutic
range. However my inr levels are usually
not therapeutic so my medication is then
adjusted to get me to that therapeutic
level.
More recently, as if the aforementioned
were not enough my specialist has
explained to me that all of those inr's
(that were checked over the last couple of
years weekly) are most likely false.
In short, new research shows that when my
inr was 4.7 (high) my factor xa levels of
20 (taken at the exact same time as my
inr) were (therapeutic) and more
accurate.
Even though an inr of 4.7 could cause a
person to bleed to death, it is apparently
a therapeutic range for me. (and likely
other individuals out there on coumadin
therapy).
Nevertheless, even though monitoring
individuals on coumadin with a factor xa
test will give more accurate results. It
is hardly ever used. Possibly because
it is more a more expensive test and even
my doctors are afraid to let me go running
around when the my inr shows 4.7 it is too
risky. Given that, I find myself
wondering; is it to risky not using the
factor xa test and continuing to take
coumadin which is monitored by my false
inr.
Frustrated......
