Please share experiences with this problem
or any kidney problems with lupus. I have
protein leaking in my urine and I had a
kidney biopsy. My doctor prescribed
cellcept and it was working but it costs
1,000.00 per month and my insurance won't
cover it. I lost my job due to my illness
and disability so things are pretty tight.
I would appreciate any words of
encouragement or experiences from others.
I am worried about dialysis in the future
if this isn't brought under control.
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Dalia
New User, Becoming EHEALTHy
Joined: 27 Jul 2005 Posts: 1 Location: Texas
Lupus Nephritis Posted: 07-27-05 00:36am
Hi, I am 20 yrs. Old I was diagnosed with
lupus nephritis about 2 yrs ago.
It was one of the worst experience in my
life I had acute kidney and was very sick
because of it. But now I am doing much
better I used to take cellcept but it
irrrated my stomach so I no longer take
it. Now I am taking myfortic it is a lot
better. I just want to let all of you
know just to hang in there. Keep away
from stress not good for your kidney
function.
Good luck to all :d
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vbiels
New User, Becoming EHEALTHy
Joined: 16 Mar 2005 Posts: 3 Location: Texas
Lupus Nephritis Posted: 07-27-05 10:33am
Dalia, thank you for your response to my
request. I'm so happy for your success
in treating your kidney problems. I am
going to mention that drug to my doctor
next month. I can't take cellcept
either, partly because of the expense and
it also effected my stomach severely and I
became dehydrated. It helps to know that
others can sympathize with my problems.
There is no support group where I live.
The closest one is dallas and san antonio
which both are two hours away. Good luck
to you and everyone dealing with lupus.
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missbehavin
New User, Becoming EHEALTHy
Joined: 24 Aug 2005 Posts: 1 Location: Wichita
Posted: 08-24-05 01:04am
I am very new at this, I was told three
months ago. I to have kidney involvement.
I just came home from the hospital today
from a kidney biopsy. I had chest pain
last week, that took me through a heart
cath.
I have been on the prednisone, altace and
plaquanil and now they are talking about
cytoxin....Has anyone been on that?
I am having a hard time getting on my feet
right now and getting very angry. I am a
paramedic and hate being on this side of
patient care.
Please help..Anyone???
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kait77
New User, Becoming EHEALTHy
Joined: 29 Jul 2005 Posts: 13
Posted: 08-29-05 23:32pm
If you can not afford the medication and
it makes you to ill to continue anyway
call your doctor immediately! There are
alternatives and furthermore many
pharmacutical companies will give you the
medicine free or at very low cost if
buying it is a financial hardship. I am
including several links that may assist
with the costs. If you are in the us call
your local social services department as
well, there are programs to help. Also
apply for ssd/ssi as it can help as
well.
Darn, I just wrote a long winded post and
I got logged off.
Well i'm new to this site but not to
lupus, specifically lupus nephritis (ln).
Girlfriend was diagnosed 6 mos ago with
class iv ln, one of the severe forms of
ln. So I was quite scared (her too of
course) at the beginning, esp reading
about potential for end stage renal
disease (esrd), dialysis, transplant..
But even with class iv, she has improved a
lot, so much so that at least from lab
test results, her kidneys are functioning
just about normal.. But of course she has
to keep taking her meds for months/years
to come..
I'll write some stuff about the meds
1) cytoxan (generic name:
cyclophoshamide): this is used for severe
ln. It has been used for many many years
and has been thought to be the best
treatment for ln, although it has high
potential for side effects (from the not
too serious bouts of nausea/vomitting to
much more serious effects like
infertility). She was started on
intraveneous cytoxan shots (once a month
for 6 months initially), but she responded
so well after the first treatment that
they changed to myfortic
2) myfortic/cellcept: is a newer drug and
even newer for treating ln, but has shown
to be just as effective (or better) than
cytoxan with much less side effects.
3) prednisone (pd): standard med for most
lupus patients, esp those with kidney
involvement.. My g/f started with 30mg a
day but now is at 7.5mg..
4) antimalarials (placquenil, hcq) has
shown to be very good for lupus patients..
The benefits of it show slowly so the 6
months is the usual minimum duration.
Important thing i've observed: take your
meds everyday at the proper time..
Evertime! And stay positive and have
faith.
Be glad to offer any more info/experiences
on ln ..
