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clarebear
Experienced User , Rather EHEALTHy
Joined: 29 Sep 2003
Posts: 120
Location: Can't keep up! Florida now!
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Lupus Related...periods?
Posted: 11-18-03 07:47am
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Hi all...I talked with lady brannon and
this is the story...
In a nutshell...
I have gotten my period three times in the
last five weeks. I've been diagnosed
with lupus (sle) since april 2002 and all
the meds I am on are the same meds as
before, only lower doses. I've been on
these low doses since about june.
Anybody out there know what the heck is
going on? Or had gone through the same
thing? I am calling my doctor(s) today
to check on how "normal" I am but
still...
Thanks in advance.
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003
Posts: 191
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Periods
Posted: 11-18-03 19:04pm
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Hi clearbear, yes , I know exactly what
you are going through!! In jan-'98 I had
to have a hysterectomy.  I had beed haveing
problems with my periods for about a year
or so. They started getting closer
together. First -3\weeks apart and then
two, until I was having a continuious
flow. Talk about being miserable!! 
finally I could not take it any more. I
was also in alot of pain with them. My
flow also was very heavy. To the point
that I had to be hospitalized!
There is more to the story,but I won't
go in to all the details here. You need
to see a doctor soon!! Don't wait like I
did. I almost lost my life because I put
it off so long. I have no clue if it had
anything to do with my lupus, but I
wouldn't be surprised. It seems to hit
all areas. Your the first one i've heard
who was having similar problems.........
Sharon 
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 11-19-03 14:02pm
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I get the opposite. The high dose
steroids cause me to not have one at all.
Of course, as I say this, I am randomly
bleeding.
If anyone has a good idea about this,
please let us know!
Hugs,
ladybrannon
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clarebear
Experienced User , Rather EHEALTHy
Joined: 29 Sep 2003
Posts: 120
Location: Can't keep up! Florida now!
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Lupus And Periods
Posted: 11-22-03 19:15pm
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Well ladies...The obygyn said I could be
pregnant.
I am not, nor do I want to be. Just
tested today. Negative negative
negative.
No real answer to the periods, nobody
knows. The rheummy said to call the
oby/gyn so...
It's over for this week, i'll let you know
after next week. They seem to be coming
closer together (three weeks, then two
weeks, who knows, maybe really after next
week?)
have a good thanksgiving all.
Clarebear
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kris
New User, Becoming EHEALTHy
Joined: 29 Sep 2003
Posts: 36
Location: okmulgee,okla.
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Posted: 11-24-03 11:15am
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Im like lady b, mine stop coming most of
the time. And when they do come they are
very light. Also very nerve racking as
you never know when to expect it.
I dont know if its lupus related, but
my doc said I was going through the change
at 36  I have to think it
has something to do with the lupus,
because why would someone at 36 start
going through the change 
I now take hormone supplements for
this. Added to all the other meds I take.
It doesnt help the period situation, but
it does help with the hot flashes and mood
swings.
Hugs to all,
kris
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clarebear
Experienced User , Rather EHEALTHy
Joined: 29 Sep 2003
Posts: 120
Location: Can't keep up! Florida now!
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Periods, Lupus, Womanhood
Posted: 11-24-03 11:30am
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Kris -
my doctors won't let me go on any
hormones. Period. Pardon the pun.
Its a kttle frustrating because i'd been
on the pill for so long but they are
afraid I might have a huge flare or
something.
Thanks for the info though.
Clarebear
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jonesm51280
New User, Becoming EHEALTHy
Joined: 22 Dec 2003
Posts: 10
Location: Seattle,WA.
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Posted: 12-23-03 14:04pm
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Hi i'm melissa,well for me it went shorter
and shorter 3 weeks apart then two then
all the time, I found out my kidneys were
bleeding and I had procrastinated so long
that I only had a third of my blood left
and had a blood transfusion.Then the same
thing started happening and I thought it
was my kidneys again and found out I was
pregnant so it's a mystery to me to if it
was my lupus or not, but I would say get
to your doctor right away!Wish you well,
and anwsers 
melissa
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clarebear
Experienced User , Rather EHEALTHy
Joined: 29 Sep 2003
Posts: 120
Location: Can't keep up! Florida now!
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Why Men Should Have Periods
Posted: 12-26-03 16:32pm
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I thought this may garner attention!
Anyway...The update on me and my
forever-closing-in periods is that my
obgyn finally convinced my rheummy to let
me take the pill. It's called camilla
and it's very very very light and is
synthetic so no "real" hormones" are
entering my system. It is so sensitive
though that it must be taken within two
hours of itself daily (meaning that if I
take it at 9 am, I can take it at 7 am or
at 11 am but not earlier or later). And
I cannot cannot skip a dose whatsoever.
My period came a month after the last one.
Of course, it came this week though but
it was very light and I am very happy
because it didn't hurt like the dickens
(oy, the puns!)
happy holidays all!
Clarebear
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 12-27-03 08:33am
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Thanks clarebear! I am going to mention
that to my docs. That sounds like a good,
possible solution for some of us! Thanks
for sharing.
Hugs!
Ladybrannon
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leucara
New User, Becoming EHEALTHy
Joined: 01 Apr 2004
Posts: 33
Location: Los Angeles
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Hmmmm
Posted: 04-25-04 00:55am
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Same thing is starting to happen to me.
Periods all the time. But I think I can
track this to when I started plaquenil. I
think plaquenil is the cause of this
problem. Have you guys been on plaqueil
before??
Shawna
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 04-25-04 04:28am
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I've been and off plaquenil several
times...Never had it interfere with my
menses. Anyone else?
:d
hugs,
ladybrannon
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clarebear
Experienced User , Rather EHEALTHy
Joined: 29 Sep 2003
Posts: 120
Location: Can't keep up! Florida now!
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Periods
Posted: 04-28-04 12:13pm
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Yah yah it's been a while since i've
checked this out 
no plaquenil (sp) but had chemo for the
_slight_ nephrological aspects. The chem
of course caused the periods to go away,
come back...But haven't had chemo since
december and the every two week thing
ended, but in march I had the every-two
week thing again. Periods are getting
lighter too but still very crampy in the
beginning (not to mention that other
side-effect, which pleases the hubby
because it's before all that mess even
begins)...
I was secretly kind of hoping to get
pre-menopausal. Not having kids so it
would have helped greatly, the "natural"
birth control.
Ta ta
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 04-28-04 13:11pm
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You know...I had a lupus friend that just
told me that they told her that if she
really knew that she did not want kids...
To go have her tubes tied...Or the likes,
it could help with the hormones...Which
they think play a huge role in flares!
What do you all think of this?
Hugs,
ladybrannon
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clarebear
Experienced User , Rather EHEALTHy
Joined: 29 Sep 2003
Posts: 120
Location: Can't keep up! Florida now!
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Tying Tubes Or That Other Thing (male)
Posted: 04-29-04 01:28am
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Been considering that for a while. The
hubby is offering to be fixed. We keep
talking about it, I think we will do it --
on my part if it really does help with the
flares -- and not have to worry anymore.
Tying tubes still means periods though,
doesn't it? 
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leucara
New User, Becoming EHEALTHy
Joined: 01 Apr 2004
Posts: 33
Location: Los Angeles
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Hmmm
Posted: 04-29-04 02:01am
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Yes, you will get periods.
Shawna
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 04-29-04 03:00am
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You can always go the whole nine
yards...
Anyone considered that?
Hugs,
ladybrannon
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leucara
New User, Becoming EHEALTHy
Joined: 01 Apr 2004
Posts: 33
Location: Los Angeles
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Hmmm
Posted: 04-29-04 15:29pm
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No not yet. I am a little scared to do
that as I know how illusive lupus is.
At the moment I am not really doing much
about it because I want to give my body a
chance to figure things out again. There
isnt much they can do about the period
thing anyway and my case is much more
complicated then just frequent periods.
Doesnt frequent periods mean active
disease? Will ask my dr about that one.
I have a really excellent medical team at
cedars that are trying to figure things
out. I hope they do. Will leave any new
information I learn.
Thanks!
Shawna
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clarebear
Experienced User , Rather EHEALTHy
Joined: 29 Sep 2003
Posts: 120
Location: Can't keep up! Florida now!
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the Whole Nine Yards
Posted: 04-30-04 00:20am
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Ok, funny movie. Didn't see the
sequel.
Anyway, didn't consider the whole nine
yards. Rheummy in raleigh was always
wary of going back on the hormone-filled
bc pills, which I never did go back on but
did go on a synthetic-filled bc pill to
control the cramps...Which I never, ever
felt in my life. Now I think I know what
being hit by a mac truck is.
Regardless, we've discontinued with those
because the cramps got bad again.
Will discuss the hysterectomy with doctor
in july when I see him.
Cheers all! Mayday is around the corner!
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leucara
New User, Becoming EHEALTHy
Joined: 01 Apr 2004
Posts: 33
Location: Los Angeles
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Periods
Posted: 04-30-04 05:15am
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Talk to the doctor today. He says they
dont know whay the frequient periods come
that it is not the lupus itself rather a
medication or a side effect of
inflammation. All I know is that I was
cool with the periods until I took
plaquenil.
Shawna
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003
Posts: 506
Location: TX
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Posted: 04-30-04 12:29pm
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Thanks for sharing, leucara!
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