Hi, I don't have a firm lupus diagnosis,
but I have some kind of autoimmune process
going on and it mostly effects my central
nervous system. My rheumatologist
prescribed plaquenil for me.
Does anyone here take it? What have you
found are the side effects? I heard it
can make your hair fall out and bother
your stomach. I also read that you have
to be careful of your eyes.
Thanks for any information you have to
share about this drug. I also heard it
could perform near miracles with some
people.
I'm so tired of feeling drunk headed,
weak-legged or having numbness in my hands
and feet. On a good day, I am almost
perfect, but most days I have some symptom
or another bothering me. It's hard to
work like that.
So, i'm willing to try the plaquenil.
It's either that or the dexamethasone.
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g26pa
New User, Becoming EHEALTHy
Joined: 07 Jul 2004 Posts: 14 Location: Texas
Hello Tallwoman Posted: 05-01-05 23:39pm
Hi, I am sorry you are going thru your
symptoms...My younger sister has lupus
sle...And while she was "in a flare" was
hospitalized and they gave her
plaquenil....I do know that she had an
upset stomach from the plaquenil..But it
takes a little time for your body to build
up to it. Everyone is different though
and it may not have the same effect on you
than it had on my sis. Rather than the
plaquenil, she is on predisone which she
can tolerate..But again, because each
diagnosis is different each medication
assist differently. I wish you the best,
in healing and in thoughts.
Ann
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Scottietotty
New User, Becoming EHEALTHy
Joined: 07 Jul 2004 Posts: 10 Location: UK
Re:anyone Take Plaquenil? Posted: 05-16-05 20:20pm
I take plaquenil. I've been taking it for
about a month now and haven't noticed any
side effects.
I have sjogrens syndrome. The plaquenil
is supposed to help the fatigue and some
of the aches and pains but i've been
warned that it could take up to 3 months
to work - so if your on it - its not a
quick fix.
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drummermonk
New User, Becoming EHEALTHy
Joined: 28 May 2005 Posts: 1 Location: North Carolina
Help Posted: 05-28-05 09:14am
I take plaquenil! Yes, it is true that
it can make your hair fall out, and be
hard on your stomach.
:roll: I went out drinking with a friend
last night. I shouldn't have. But, I
only had three. Anyway, I got really
sick, still feel sick...Am I at risk?
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chrislupuslady
New User, Becoming EHEALTHy
Joined: 12 Jun 2005 Posts: 4
Posted: 06-12-05 09:20am
Plaquenil can take 3 to 6 months to kick
in ,its not a med that works overnight.
Of course there are side affects like most
meds ! But if they do get too bad indeed
discuss them with your Dr.
Regarding drinking with them you shouldnt
go over the top as with any meds and
drinking.
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lorrie101
New User, Becoming EHEALTHy
Joined: 14 Jun 2005 Posts: 1 Location: Chicago Area
Plaquinil Posted: 06-14-05 10:28am
I have taken plaquinil twice a day since
the mid-80's. It actually helped my hair
from falling out. Down side is it can
cause retinopathy, so I see an eye doctor
twice a year for a thorough exam. It
definately helps reduce my flares.
Lorrie
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Mighty Oak
New User, Becoming EHEALTHy
Joined: 17 Jun 2005 Posts: 7 Location: Arizona
Posted: 06-17-05 16:55pm
(this is my first post here, hello all!)
i've been taking plaquenil since february
(2005). So far, it's been amazing! A
little history:
around age 20 I started to feel not as
spry. I was in marching band in college
and started having joint pain, fatigue,
general malaise, got pneumonia, was
diagnosed with asthma, carpal tunnel
syndrome, tendonitis, etc. They gave me
prednisone and I absolutely couldn't
handle it. I gained 25 pounds in a week.
I had dreadful stomach pains, headaches,
swelling, mood swings, couldn't focus, and
lost depth perception. I spent two years
after that uninsured.
When I finally became insured again, I
went straight to the doctor with a list of
complaints. It hadn't occurred to me how
ridiculously long a list it was for a 24
year old. So, she ordered a metric ton
of blood tests. Elevated ana got me a
referral to the rheumy.
The rheumatologist diagnosed me with
fibromyalgia and sent me for even more
blood work. I have a strong family
history of autoimmune issues, so she
figured it would be safe. Her diagnosis
was "arthritis" but she didn't specify a
type. My bloodwork was borderline in
most areas, but my ana had gone up in the
two weeks between tests. She prescribed
me plaquenil for the "arthritis" and sent
me on my way. When the follow up
appointment hit, I told her how much
better I was feeling! Less pain, more
energy, and miraculously, I haven't had
any oral ulcers. Unfortunately, it took
two months to kick in and if I miss even
one pill, I get a two week setback. I
get ridiculous oral ulcer outbreaks, pain,
fatigue, and so on until my body balances
back out again with the medications.
It's unreal. When I mentioned this to
her I got a, "hmm... That's interesting."
she prescribed me 5 refills and told me
to let her know if anything changes.
Later that month, my insurance carrier
refused to cover the plaquenil. We
needed an official diagnosis. Both my
doc and I were happy to call it
"arthritis" and let it be as long as the
medication was working. So, the doctor
reviewed my charts and symptoms and
officially diagnosed me with systemic
lupus. Joy. Anyway, I don't care what
it's called as long as I can stay on the
plaquenil.
My side effects lasted for the initial two
months. If I miss a dose, they can act
up for the first week or so (the same
period of time my body takes to readjust).
I take them with food (as directed).
It's not just a "glass of milk"
prescription, but it isn't as bad as the
prednisone was. I eat toast for
breakfast with my pill and have the second
dose with dinner. I had diarrhea for
awhile after starting (but it was easily
controlled with immodium), gas, and a few
extra blemishes. After a month it went
away completely and I stopped having any
side effects. A month after that, the
symptoms of my illness subsided. It's so
much better than the prednisone
alternative.
I told the doctor that she could prescribe
prednisone all day, but I wouldn't take
it. She said, "that's odd... Most
people with these illnesses generally
respond well to prednisone." so, I simply
informed her that it was hard for me to
tell. The medication made me so
miserable that I wouldn't have been able
to say whether it helped with the
inflamation, breathing, etc.
--mighty oak
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flomo
New User, Becoming EHEALTHy
Joined: 04 Aug 2005 Posts: 1 Location: florissant, mo.
Anyone Use Plaquinil Posted: 08-04-05 16:12pm
I have used plaquinil for about 3 years.
I started using it because I had a flare
up of vasculitis. It helped my
vasculitis and also my arthritis.
I get my eyes checked every 6mo by an
opthamalogist and have blood work done
once a year. My last blood test
indicated a below normal white blood cell
count - so I have to stay off the
plaquinil for 3 months and repeat the cbc
to see if the plaquinil is responsible.
My stomach has never bothered me nor have
I had hair loss. I had immediate results
from plaquinil and certainly felt better
by taking this medication.
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kait77
New User, Becoming EHEALTHy
Joined: 29 Jul 2005 Posts: 13
Plaquenil Posted: 08-04-05 18:10pm
I had never heard of plaquenil causing
hair to fall out. My rhuemetologist said
it can take 6 months to a year to see the
benifits of plaquenil. But when 3 months
into the meds I was not doing well she
began talking of stronger medication. I
have thining bones and prednisone is
something we had hoped to avoid. Instead
I am on 5-10mg a day depending on how I am
feeling. I may very well need to go for
the stronger meds but I keep hoping that
given enough time the plaquenil will
control things. I started it late in
april so it might take a little while
longer to kick in. I was on plaquenil for
3 years and did very well, but my blood
work came back normal once and the rhuemy
I was seeing said it meant there was
nothing wrong with me and pulled all my
meds. That was a little over a year ago.
Thanks to that I had to go through the
whole diagnosis process again. Worse I
experienced the worst flare of my life and
nearly ended up in the hospital. The
first time I was on plaquenil I was one of
the near miracle cases- my symptoms were
so well controled I got my b.A. With
honors in less than 4 years. Now I am
barely functioning.
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littleone1989
New User, Becoming EHEALTHy
Joined: 29 Aug 2005 Posts: 1 Location: Surrey, B.C., Canada
Posted: 08-29-05 22:46pm
I have a grade 4 systolic heart mumur
caused from my lupus, and I was put on
plaquenil. I found that my heart beat a
lot faster while I was on this drug. It
took a while to see some results, but
within two months my skin had started to
clear up and I hadn't had any joint
problems. I found that it made my
stomach a little uneasy though, and I lost
weight. After being off of plaquenil for
two months, I had a flare and wasn't able
to walk because of the swelling in my
joints. I've been off the drug for a
year now, and I really want to get back on
it. My blood came back almost completely
normal after 3 months of being on the
drug. A year and a half ago, I had my
tongue pierced and the head rheumatologist
in my team called me a liar, and
completely disregarded my lupus. She
said the only reason I was unhealthy was
because I was too inactive. It was
really a kick in the groin for me because
plaquenil made my life so much better. I
didn't even know I could feel so good.
Now that i'm off it, it's really
depressing.
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Go2extremes
New User, Becoming EHEALTHy
Joined: 04 Feb 2008 Posts: 43
Plaquenil and mental disorders Posted: 02-25-08 18:43pm
Yes I have been on plaquenil for almost 2
years. It does wonders for aches and pains
HOWEVER, entire mood stability started to
diminish to the point that I had to go to
therapy only to be diagnosed with Bipolar
disorder. I learned later that this drug
has the potential to enduce mental
disorders. Hey I like the drug for the
pain...but what its done to my life
mentally for my family and I..is a
different story, I'll take tylenol
arthritis sooner than taking plaquenil
again!
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artgirlgso
New User, Becoming EHEALTHy
Joined: 07 Jul 2008 Posts: 2
plaqenil Posted: 07-07-08 08:54am
I was diagnosed with lupus about 3 weeks
ago, and have been taking plaquenil for
the past 3 weeks. at first it made my
stomach really hurt, but taking it after
eating took care of that.
however I now seem to be having a reaction
to the medication in the form of an
extremely itchy rash that started on my
back and has spread all over my body. it
is especially bad on my head and face.
the on call dr just told me to stop taking
it and take some benedryl, but I am so
miserable it is not funny.
not sure what is going to happen now.
has anybody else had this happen ?
