Joined: 01 Aug 2003 Posts: 13 Location: Bradenton, Florida
Weight in Lupus Patients Posted: 08-01-03 19:41pm
I was diagnosed with lupus 6 years ago. I
keep it under control with medicine. My
doctor is never too excited about trying
new medications on me. In fact, most Rhem.
doctors I have visited don't really pay
much attention to anything I have to say
to them. They just look at me and say,
well, there are no new medicines on the
market.. I have had no luck in finding a
good doctor to take care of my lupus.
Also, does anyone out
there have any trouble trying to lose
weight. My thyroid tests always come back
normal but, I am having a rough time
taking off any pounds. Can someone relate
to this and, if so, please write to me.
And, if anyone can suggest a good doctor
in the Sarasota area of Florida , please
let me know.. thank you so much..
|
sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Weight Posted: 08-01-03 22:52pm
Hello Hadley, Yes it seems like we all are
having weight problems. Mine started with
Prednisone! They havn't come up with
anything to help that much for us who have
lupus! I feel like they aren't doing
enough to find answers!I had very good
doctors in Texas and Florida, but they say
all that can be done is to find the right
med's to help us function. I have been
watching alot of discovery health and I
never hear anything about Lupus. All the
commercials on Tv talk about med's to help
with every other illness known to man
except Lupus. Makes me wonder why that is?
Sharon
ST. Marys GA.
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Weight Posted: 08-01-03 22:59pm
I feel for you! Yes, getting the weight
off is so hard! I have gained 70 pounds
after being on high dose steroids for
going on two years.
AS for good doctors, and I know this seems
lame, but you just have to keep trying. It
can take a while to find a good one.
Here are some things I suggest:
1) Contact other Lupus Patients and talk
to them about doctors.
2) Check the LFA's website
(www.lupus.org). They can give you several
docors in your area.
3) If there is a local chapter or branch
of the LFA, contact them! They will know
tons about being treated for Lupus in your
area!
Good Luck,
LadyBrannon
|
dgayala
New User, Becoming EHEALTHy
Joined: 06 Aug 2003 Posts: 3 Location: florida
Weight Gain Posted: 08-06-03 13:48pm
I knew it!!! I had lost 54 pounds on my
own..Then I was diagnosed with mctd and
given all these meds and boom!! It's
back!!! The doc said it couldn't be the
meds..No indication that it was a side
effect in any med besides prednesone.
Thanks for letting me know that I am not
crazy.
|
turk0182
New User, Becoming EHEALTHy
Joined: 07 Aug 2003 Posts: 2 Location: Oklahoma
Posted: 08-07-03 13:58pm
I have lupus and been on staggered dose of
predisone since 1996. Like others I
gained over 60 lbs. This year I decided
to take control of my weight problem. I
joined weight watchers. Since march I
have lost 26lbs and still trying. It's
slow and sometimes only less than a pound
lost in a week but it works! I had a
flare up 3 weeks ago which took me to the
hospital and pumped full of iv steriods
and then back on high doses of predisone.
I stayed on my weight watcher program and
still lost. Good luck!
|
Hadley
New User, Becoming EHEALTHy
Joined: 01 Aug 2003 Posts: 13 Location: Bradenton, Florida
Weight Gain In Lupus Posted: 08-07-03 14:52pm
Thankyou everyone for all your relpies to
me. I hope I keep hearing from all of
you. My weight problem is not coming from
steroids however. I refuse to take them,
due to the fact that I gained 100 pounds
from depo metro, a couple of years back.
... I just take plaquinil. I've been on
every diet know to man. Last year I took
off 60lbs and that was it. I have been
struggling ever since. I diet faithfully,
and lose nothing. My doctor tested my
thyroid profile and it comes back normal.
I am just totally discusted and perplexed.
I guess the next step will be to go
to a thyroid specialist. I know that
lupus can affect the thyroid as well as
other organs. I hope someone can shed
some light on this for me... My lupus is
under control right now, thank the lord.
Doctor says I have a mild case. For now
anyways. Well, thanks again all of you
guys and, hope to hear from you. Good
luck to all and, may god bless!
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
to Hadley Posted: 08-09-03 08:50am
Are you doing any form of exercise?
I believe you said that you have already
lost 60 pounds...Correct? Almost all
people losing weight find themselves in
periods of time when they cannot lose
weight (called plateaus (sp?))...You will
find that sticking with it and exercising
more will help things.
I hope this helps!
Ladybrannon
|
Hadley
New User, Becoming EHEALTHy
Joined: 01 Aug 2003 Posts: 13 Location: Bradenton, Florida
Posted: 08-09-03 10:44am
To lady brannen.......... Yes, I lost
60lbs. , but have only maintained my
weight for the past year. I had surgery
on my knee recently and have not been able
to exercise. Before my knee operation I
belonged to an exercise place called
curves. I continued to maintain and not
really diet. Now, its time to diet again.
This is when I discovered that the weight
won't come off. I have been strickly
dieting now for 2 mo. And have lost
nothing. Lupus can get into organs. It
can get into the thyroid. Its already
been in my kidneys for 2 years but its not
severe enough for medication just yet. I
just keep my eye on it! I know the next
step will be a thyroid doctor. I will see
when I go back to my rhem. In a few
weeks. Its all so frustrating. I am
totally discusted. People see me as the
person who is always dieting and never
gets any thinner. I know they probably
think I just say I diet. Sometimes I
think my doctor thinks that too. He is
also getting on my nerves. I have found
another doctor who has a good reputation
for really caring and actually helping
people like us so, after my next visit to
my own doctor and, if he is still not
doing right by me then, I will go to the
new doctor. These doctors see us with a
disease that there is no cure for. Its a
mystery to them so, they really don't show
proper interest. All they do is perscribe
medicines that make most of us have bad
side effects. If we question them well,
they say its either this or death., i'm
mean , come on. What kind of answers are
those I ask you. Well, take care and I
will keep you posted.. Thanks again for
caring...
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
to Hadley Posted: 08-12-03 10:27am
Yes, you are correct...It can get into the
other organs. Have you talked to your
doctor about it possibly being in your
digestive system? I know i, just
recently, have started looking into that
myself.
As for your doctor, I am thrilled that you
have found another doctor. It sounds like
you needed to do that.
Do you have any research colleges or
hospitals in your area? I have found that
at those type of facilities; you will find
people who do care about this disease.
Just because this disease has no cure, is
no reason for you to get the "who cares"
attititude. There are lots of lupus
researchers with both public and private
monies.
Yes, please do keep me informed. I wish
you well!
Ladybrannon
|
sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Hadley Posted: 08-17-03 10:02am
I'm not sure where your town is located?
I'm in st mary's, ga. Near jax. I lived
in jax. Beach for 14yrs. It would be
nice to find somebody close to home to
talk to. Not that i'm giving up this web
site. It's great knowing there is
a-lupusland out there to share our ups
and downs with without feeling like a
hypercondreact.
I have non-lupus question. How do I
add those emotions in? They are
so...Cute! Till next time,
sharon
|
Hadley
New User, Becoming EHEALTHy
Joined: 01 Aug 2003 Posts: 13 Location: Bradenton, Florida
Lupus And Friends Posted: 08-17-03 15:37pm
Hi sharon,
I live in bradenton, florida. This is
near tampa, st. Petersburg. Why are you
giving up this web site? There are lots a
good people out here who can help you with
your lupus questions, and I know they are
all willing to be your friends too!
....
To use the emoticons, just click on the
one of your choice. It won't appear right
in front of you, but it will show up when
your message is sent. If I can be of any
help to you, write to me anytime., ok?
We lupus people do get treated pretty
badly most of the time. Most people and
the doctors ignore us. The doctors would
rather treat people who have diseases
where they can make lots a money. I
firmly believe that they actually try to
make people stay sick. I mean come on.
Without us ill patients, they would have
no jobs. Thats why its so hard to find a
caring doctor these days. One who
actually wants to help us. I live in pain
daily. Now, I had to give up one of my
anti-inflamm's pills cause, I can't afford
them anymore. I pay over 400. Dollars a
month on medicines. I have to give up
some of them. They are poisen anyways. ,
most of them are I believe. Just another
farce to make the phar. Richer then they
already are! I just recently found out
that the prices on medicines are
controlled by the pharmacies., not the
government. I need to research this some
more to make certain that what I learned
is correct. Do you have a good doctor?
Mine just tells me, move your head from
side to side, lift up your arms over your
head, listens to my heart and then writes
out the rx's and says see ya in 3
months... When I tell him about how I am
feeling, he just stares at me like i'm
nuts. He is clueless. Then, charges me
100 dollars. Isn't that nice?? So, I am
currrently searching for a new rhem.
Doctor. I was referred to a good one
recently, but he is very far away. Too
far for me to travel. ....... Well I
wish you luck and don't give up. Keep me
posted. I am here for anyone who needs to
talk. Bye for now, and never give up
hope...
best wishes,
hadley
|
sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Hadley Posted: 08-17-03 21:21pm
Give up this web site,never sorry if I gave you
the wrong impression. What I meant was I
know someone in tex. Who has ra. And
someone in oregan who has something
called polymalgha ( not sure about the
spelling). I don't get to talk to them
very often. I feel bad about complaining
about my medical bills now. I live near a
base, and my husband is retired navy. Our
meds are free if they carry them. Plus we
get other meds thrugh a mail-order place,
$9 for name brand and $3 for generic. We
are very lucky! It's my doctor bills that
are hurting me. They add up real quick as
you probably know. I haven't seen my
rhuematoligist for over a year. My
primary doctor just chewed me a good one
when she found out! I could not aford so
many different doctors! I also have
epilepsy , which means I was seeing a
neurolgist. Plus I have ashma, they
wanted me to see an oxegen therapist.
Plus I have carpul-tunnel in both hands,
and was seeing a hand surgeon who did one
hand and then told me it would probably
come back because lupus produces the stuff
that causes carpul-tunnel. I'm still
paying on that bill and it's been over two
years! My eyes are getting real bad and
they want me to see an eye surgeon for
surgery. Plus my feet are giving me
problems that require surgery. Most
recently my back and knees are causing me
lots of pain. I quit going to all of my
doctors except my gp. I couldn't afford
all the others. Thats not counting test
and emergency room visits and hospital
stays. My gp told me I have to start
seeing my rheumatologist on a regular
basis. Wow I let it all hang out, didn't
i. Sorry. My rheumatoligist is very nice
but other than steroids there isn't much
he can do. I won't take them again! He
talked to me about seeing another doctor
at the mayo clinic in jax. More money I
don't have. I think they should give us
our disability without the hassel. There
is no cure but they give us all this grief
when it comes to helping us. Oh, did I
forget to mention being depressed, that
also comes with having lupus . Another
pill! I must admit i've thout about
writing someone like montel williams who
has ms. Or even doctor phil just to let
the world know we are out here, and we
need to be recognized as serious disease.
|
Hadley
New User, Becoming EHEALTHy
Joined: 01 Aug 2003 Posts: 13 Location: Bradenton, Florida
Posted: 08-18-03 00:19am
Hi sharon,
how are you doing? I know just
how you feel. I had knee surgery in april
and the knee isn't much better. All that
did was give me bronchitis and phen. I
pray you can get on medicare and
disability. The medicare only pays 80% of
medical bills, but that helps a whole lot.
It dosen't however pay for
perscriptions.
I too often thought about
writing to someone on tv, but I don't
think they will listen. They rather have
stories about nasty subjects then people
with real problems. And, ya know these
stars get the best of care. Unfortunately
for people like us, that kind of care is
far and few between. We are basically on
our own. I try to read and learn as much
as I can about natural products. I have a
good herbologist that helps me a lot. Try
taking bovine cholostrum. This has helped
me so much. You can go to any health
store and they should tell you all about
it , or you can look it up on the
lupus.Com. I found that site very
informative. They speak of bovine
cholostrum also for lupus patients.
Let me know how you are, keep me
posted and if I can ever give you good
advice on anything I find out to help us,
I will surely let you know... Bye for
now......
Hadley
|
sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Herbs Posted: 08-18-03 09:46am
Hi hadley,
thanks for your advice and support. A
very good friend of mine introduced my
husband and I to herballife in '98. It
was fantastic! We both lost weight and
felt wonderful our doctors were
very surprized and very happy. The
results were amazing! I lost over 50lbs
and went from size 16 to size 6 in about
4mos. Our doctors said keep at it.
When we decided to move back to the
florida area to be near our sons and our
grandchilderen, the cost of living went
up. Our morg. Alone doubled. But it was
worth it to be close to our kids. the only problem
was we could no longer affored our
products. I wish the
goverment would recongnize herble meds as
a sorce of treament. The problem is with
the pharmacuetical companys. They are
afraid of losing money. I realize not all
herbal products are good, but when you get
good results, and your doctors approve.
That can only be a good thing. :d if I
can get on ss, I will drop most of my meds
and start takiin my herbs again
now I need to get off my rear and make an
appointment with my rheu. Thats the first
step towards getting my disability. Bye
for now.
Sharon
|
Hadley
New User, Becoming EHEALTHy
Joined: 01 Aug 2003 Posts: 13 Location: Bradenton, Florida
Posted: 08-18-03 14:19pm
Hi sharon,
how are you doing? I
remember using herbal life years ago. I
lost some weight with it. Then after
awhile it didnt' work anymore. I then
lost 80 somersizing ... That is suzanne
somers way of eating. It works very well.
I don't care for atkins cause that can
cause kidney problems and the gout. With
lupus we need to be careful of those
things. Its just hard to lose weight.
but, we keep on
trying! herbal life did go
up in price, I noticed. But, what
hasn't.. Right?
Keep trying to get on
disability, you've got to keep trying and
not give up. It does help. Not with the
medicines, but with the doctor bills.
Let me know how you are coming along...
Thank you for writing to me, and I will
always try to help. Bye for now...
And... Take
care...
Hadley
|
sue
New User, Becoming EHEALTHy
Joined: 31 Aug 2003 Posts: 25 Location: united states
Weight Posted: 08-31-03 21:37pm
I just discovered this website and find it
very interesting! In fact I posted a
question so hope I get an answer soon.
But about the weight - I lost about 10 pds
since I had lupus. Not sure why except
maybe with the meds im not hungry??? Im
really not and eat smaller portions. I
was only about 115 to begin with and of
course have the upset stomach thing - no
more jogging outside - I exercise inside
near a bathroom. I also can be in the sun
and don't usually get to bothered - once
in a while the rash comes out, but I try
to be careful. Im able to get color tho
during the summer and have laid out. But
I have the other problems. But exercise
really helps also with the pain of lupus
once you get going, which does'nt seem
possible but it does.
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Too Sue About Weight Posted: 09-02-03 22:42pm
Typically a newly diagnosed or recently
flaring lupus patient will lose weight not
gain. The steroids and a few other drugs
(treating flares) are what cause
significant weight gain, not lupus...
Welcome, by the way...I am lady brannon.
|
Hadley
New User, Becoming EHEALTHy
Joined: 01 Aug 2003 Posts: 13 Location: Bradenton, Florida
Posted: 09-03-03 00:17am
Thats not entirely true. I've had quiet a
few doctors including thyroid specialists
tell me that lupus can affect the thyroid.
I have it in my kidneys and in my
thyroid. This can cause all kinds of
crazy things to happen with ones weight.
Until proper medication is given. Sorry
to diagree but, i've got medical proof to
back what I say... Yes, steroids can
cause weight gain also. That happened to
me too. But, make no mistake, lupus can
affect the thyroid. Afterall it is an
organ and thats what lupus attacks. I
cannot say it can or will affect anyone
else's thyroid, I am not a doctor, all I
can say is what has happened to me. And,
it can happen to any lupus patients.
Hopefully it won't but , it can.......
When my cousin was first striken with
lupus, she lost her appetite and lost over
20 lbs., then, after seeing her physician
and getting on the proper medication , her
appetite returned to normal. Good
luck to all.... Hadley
|
LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
to Hadley Posted: 09-03-03 11:04am
I never said it could not influence the
thyroid. I simply implied it is not the
norm...Point in case, only about 30% of
lupus patients have lupus nephritis. Less
than 10% have odd lymph node swellings
caused by the lupus rather than a viral or
bacterial infection.
Lupus can affect pretty much anything...I
hope you get some relief with it.
ladybrannon
|
Hadley
New User, Becoming EHEALTHy
Joined: 01 Aug 2003 Posts: 13 Location: Bradenton, Florida
Posted: 09-03-03 14:17pm
hi
lady brannon,
how
are you? I tell ya the truth, i'm so
discusted with it all. I cancelled my
doctor's appointment 3 times. I looked up
all the latest lupus medicine and the side
affects are all so bad I don't want them
either. I tell the doctor I hurt and he
just stares at me with a blank look on his
face. I've tried to find another rhem.
Doctor near me but, there not even any
listed in the phone book. Maybe a few,
but I heard through friends that they are
not so good either. But, today I feel
better then I usually do. I think its the
dampness in fl., that makes the pain
worse. Some days is more damp then
others. I need to make an appointment
with the kidney doctor, thats an important
one I can't neglect. I stopped my
anti-inflam. Because its so expensive and
was really not helping me anymore. I went
off my buspar, the anti anxiety medicine
cause that wasn't helping either. All I
take now is the plaquinil, pain meds as
needed, but don't take much of that
either. It dosen't really take the pain
away very well so no sense in taking it.
Are you in pain? Well, thanks for
listening... I know you know lots more
then I do so maybe you can keep me
informed... Thanks, bye for
now........... Hadley..... :d
sorry if I gave you
the wrong impression. What I meant was I
know someone in tex. Who has ra. And
someone in oregan who has something
called polymalgha ( not sure about the
spelling). I don't get to talk to them
very often. I feel bad about complaining
about my medical bills now. I live near a
base, and my husband is retired navy. Our
meds are free if they carry them. Plus we
get other meds thrugh a mail-order place,
$9 for name brand and $3 for generic. We
are very lucky! It's my doctor bills that
are hurting me. They add up real quick as
you probably know. I haven't seen my
rhuematoligist for over a year. My
primary doctor just chewed me a good one
when she found out! I could not aford so
many different doctors! I also have
epilepsy , which means I was seeing a
neurolgist. Plus I have ashma, they
wanted me to see an oxegen therapist.
Plus I have carpul-tunnel in both hands,
and was seeing a hand surgeon who did one
hand and then told me it would probably
come back because lupus produces the stuff
that causes carpul-tunnel. I'm still
paying on that bill and it's been over two
years! My eyes are getting real bad and
they want me to see an eye surgeon for
surgery. Plus my feet are giving me
problems that require surgery. Most
recently my back and knees are causing me
lots of pain. I quit going to all of my
doctors except my gp. I couldn't afford
all the others. Thats not counting test
and emergency room visits and hospital
stays. My gp told me I have to start
seeing my rheumatologist on a regular
basis. Wow I let it all hang out, didn't
i. Sorry. My rheumatoligist is very nice
but other than steroids there isn't much
he can do. I won't take them again! He
talked to me about seeing another doctor
at the mayo clinic in jax. More money I
don't have. I think they should give us
our disability without the hassel. There
is no cure but they give us all this grief
when it comes to helping us. Oh, did I
forget to mention being depressed, that
also comes with having lupus . Another
pill! I must admit i've thout about
writing someone like montel williams who
has ms. Or even doctor phil just to let
the world know we are out here, and we
need to be recognized as serious disease.
I wish the
goverment would recongnize herble meds as
a sorce of treament. The problem is with
the pharmacuetical companys. They are
afraid of losing money. I realize not all
herbal products are good, but when you get
good results, and your doctors approve.
That can only be a good thing. :d if I
can get on ss, I will drop most of my meds
and start takiin my herbs again 
now I need to get off my rear and make an
appointment with my rheu. Thats the first
step towards getting my disability. Bye
for now.
