To Sam: Re: edema/local pcp

August 15, 2005

Sam: I'm just perusing the messages since I've been in somewhat of

another flare for the past 4 days now..wasn't even well enough to

get a shower for three days which is ENTIRELY unusual for me. I'm a

a clean freak as well as a hygiene freak...so I was really hating

it. But, I was just so ill and exhausted to get into the

shower..just about able to wash my face and brush my teeth. I

finally got a shower today and feel a bit better but still not 100%.

At any rate, I don't have any advice for you regarding the edema and

I sure wish I did, but I am having the exact same problem!! I can't

wear any of my old shoes (and yes, I am a shoe freak too!!) and from

my knees to my toes look as you described like stuffed sausages. My

pcp gave me a diuretic called Amiloride and I really think it causes

my pain to get worse even though he swore up and down that this is

one of the diuretics that don't cause problems with the panc. Well,

I got the attack after about 4 days of being on them and of course

the swelling had come down a little (still not totally even WITH the

diuretic!)...but then I blamed the attack on the diuretic (As this

has happened once before) and stopped taking them.

Please, please does anyone know what we can do about this awful

edema?? If I tell my PCP that it was caused by the diuretic he

won't believe me!! I'm in between GIs right now (trying to find one

that specializes in pancreas patients only)...so I don't know where

to turn. I'm going to try and give this diuretic one

more " chance " ..after this attack calms down. I am actually willing

to be my own guinea pig as it were and try one more time to see if

they are the culprit for these attacks.

I mean the edema is so bad that I can barely walk!! And Sam, I'm

also getting the shortness of breath. My PCP did an echocardiogram

and it was normal and did some blood work (not sure what he was

looking for there in regard to edema) but it was normal too. I'll

read further in to see if anyone answered Sam's questions here...but

sure do need some guidance on this issue.

Hope that you all are having good days today!!

Thanks

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