What to do?

Thread view:

Enable EMail Alerts

Start New Thread

Thread rating:

Nutty - 04 Apr 2006 16:29 GMT

Hi everyone,

Sorry if I sound a little whiny, but I am in a very discouraging
flare-up (my first experience). I have serositis, which had my lung and
chest inflammed, but now it seems that the inflammation has spread to my
abdomen/back. I went to my family doctor and rheumatologist last week
and they increased my pain medications and prednisone. It doesn't seem
to be working. The mornings and evenings are still horrible. During the
day is a little better. I also noticed with the increased predinose (30
mg/day) that my face is really puffy.

The rheumatologist said that she preferred that I take all the
prednisone in the morning. If that didn't work, she would consider me
taking 20 mg in the morning and 10 mg at night. I read somewhere though
that this can be effective (splitting the dose), but it is worse for the
side effects. Has anyone experienced this? If so, have your symptoms
approved by splitting the dose? Is there anything that can be done to
address the puffy face? Diruectics?

DH would like me to go back and see the rheumatologist, but I've been
there twice already in two weeks. It's just so discouraging when nothing
seems to help. Yesterday was the first day I was really scared with this
disease as I realized I have absolutely control over this disease. I
knew that in my head, but yesterday it reality sunk in. The
rheumatologist hopes the Plaquenil will kick in after 6 weeks (I've only
been taking it about 3 weeks), but I've heard it can take up to six
months to build in your system.

Any suggestions or advice would be appreciated.

Thanks,
Nutty

Reply to this Message

BJ - 04 Apr 2006 18:34 GMT

Hi Nutty,
I don't know if splitting the dosage up will make any difference or not.
Some people find that taking the pred in the morning is better, because it
can cause wakefulness when taken before bed. I am sorry to say that there is
nothing that can be done about the puffy face. I found that hard too. I was
on 60mgs for a long time, and my face was so big that people did not
recognize me. The worst part to me was that I did not recognize my own
reflection when I looked in the mirror. I sure hope the plaquenil works for
you sooner, rather than later. I am sorry that things are so rough for you.
Don't worry about venting. We have all taken turns doing that. I found it
helpful to know that there were people who had been through it, and
understood completely.
BJ-Sk. Canada

> Hi everyone,
>
[quoted text clipped - 28 lines]
> Thanks,
> Nutty

Reply to this Message

candi bowen - 04 Apr 2006 21:38 GMT

Like BJ, I can't say whether it's better to split the dose or not; I just
know if you're hospitalized they'll split it for you in the IV. There was a
time that I had 60mg every 6 hours (Solumedrol) in an IV for 2 weeks. 60 mg
every 6 hours is a LOT. There's nothing you can do about the puffiness since
it's not water. The steroids redistribute fat to your face & the back of
your neck - has nothing to do with water. The last time I was in the
hospital I had a scarf tied around my face for visitors because I looked
like a pumpkin. It does go away. At the time I weighed 95 lbs but I looked
like I weighed 250 lbs (from face shots - which I've since destroyed!) Don't
apologize for feeling whiny; you've got to be in a lot of pain!

Candi

> From: Nutty <netzer29@hotmail.com>
> Organization: Bell Sympatico
[quoted text clipped - 34 lines]
> Thanks,
> Nutty

Reply to this Message

janers - 05 Apr 2006 15:43 GMT

Hi Nutty

I have done both ways. I found if I take the morning doses then the next
time is lunch. I don't wait for later because it makes me restless at night
and computer games only go on for SO long :)) Ants in the pantsville..

I also have had the swelling but are you on something else too? Like a
NSAID? They together for me causes retention of the water and puffiness.

But I also get when being on the higher doses after a few weeks. I have a
blood pressure pill with a diuretic in it and that doesn't make a difference
at all in reducing the puffiness.

I suggest you drink water as much as you can. I don't know if this is true
but Make sure you read your water bottle label. SOME have sodium (salt) in
them and that is a NO NO for sure. I have to find out of the ones that are
flavored have that in them.

Just remember one thing, once this dosage is over with, your swelling goes
down. I know it is hard, but you got to hang in there. It is downright
depressing to look in the mirror and see MOON glow when you didn't put make
up on....SMILED didn't ya?

so hang in there and this too shall pass.

glad to see you post
janers

Reply to this Message

Andy - 05 Apr 2006 16:02 GMT

[

>I suggest you drink water as much as you can.

In general I'd agree; it is possible to become ill through drinking too
much water (even if it's 100% pure), but you need something like 16
pints a day to do this. This is a very rare problem in some mental
illnesses, but less rare in those who frequent night-clubs, take
recreational drugs especially ecstasy, and then binge-drink bottled
water to cool down.

Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

Reply to this Message

Nutty - 06 Apr 2006 02:30 GMT

> Hi Nutty
>
[quoted text clipped - 23 lines]
> glad to see you post
> janers

Good point about the prednisone. I took it in the evening last night,
and I didn't get hardly any sleep. Makes for a bad day. I took it at
dinner tonight to see if that will make a difference. If not, I'll move
it up to lunchtime.

Thanks for the tips.

Nutty

Reply to this Message