Dr.'s comprehension of Fatigue

[Guest guest]

Hello all. Just for starters, my fatigue has been beating the snot out

of me lately. I know fatigue is a common complaint among psc patients,

and I know now that it's not run-of-the-mill fatigue, but rather a

symptom of liver disease. My GI doc seems to have trouble

understanding this. Every time I mention fatigue, he places the blame

on something else; a vitamin deficiency, for example. (By the way, I

drink fruit and vegetable juice all the time, and take multivitamins).

I was just wondering if anyone else has experienced this with their

doctor?

Take care people.

[Guest guest]

Hi ,

I'm experiencing it right now. My blood tests are all normal, so the doctor

doesn't think it's the PSC. One time this happened, and he stopped some of

my meds, and I did get my energy level back. However this time, we lowered

the dose on some meds, changed from compazine to Zofran for the nausea, and

for a few days it seemed better. But I'm in the LA area (San

Valley) and it was 110 today. Even inside with air conditioning going, I

could barely get out of bed. On top of that I felt like my head was in a

vice it hurt so much. But I drank a lot of water & coffee and finally got

moving a little. Fatigue plus the heat is just a killer. I'm on partial

disability, working 3 days a week, and hoping that I'll be better when I see

the doctor again on 10/9/07. But right now the fatigue is really bad. He

doesn't think it will be easy going on disability with normal blood tests.

But the CT scan shows cirrhosis - I would think that would count for

something. Also, some of the air sacs in my lower lungs are apparently

deflated. It's demoralizing feeling this way. And yes, I think it has a lot

to do with the PSC.

-Marie

>

>Hello all. Just for starters, my fatigue has been beating the snot out

>of me lately. I know fatigue is a common complaint among psc patients,

>and I know now that it's not run-of-the-mill fatigue, but rather a

>symptom of liver disease. My GI doc seems to have trouble

>understanding this. Every time I mention fatigue, he places the blame

>on something else; a vitamin deficiency, for example. (By the way, I

>drink fruit and vegetable juice all the time, and take multivitamins).

>I was just wondering if anyone else has experienced this with their

>doctor?

>Take care people.

>

>

>

_________________________________________________________________

Get the device you want, with the Hotmail® you love.

http://www.windowsmobile.com/hotmailmobile?ocid=MobileHMTagline_1

[Guest guest]

>

> Every time I mention fatigue, he places the blame

> on something else; a vitamin deficiency, for example. (By the way, I

> drink fruit and vegetable juice all the time, and take multivitamins).

>

It is possible that your vitamin levels are low even with a good diet

and a multivitamin. Sometimes it takes massive doses of vitamins to

get past the malabsorption that can accompany PSC. (I have

prescription vitamin D with 50,000 IU that I took to raise my blood

levels above a deficient level. Compare that to a multivitamin with

400 IU providing 100% of the daily value.) Ask for a blood test to see

if you have a deficiency (if one of the ADEK vitamins are deficient,

others probably are too) and increase your supplements bring up your

levels. It might help your fatigue, but if it doesn't, at least it

can't be held up as a possible cause.

Tim R, ltx #3 7/7/07

[Guest guest]

'my fatigue has been beating the snot out of me lately. I know

fatigue is a common complaint among psc patients, and I know now that

it's not run-of-the-mill fatigue, but rather a symptom of liver

disease. My GI doc seems to have trouble understanding this. Every

time I mention fatigue, he places the blame on something else... I

was just wondering if anyone else has experienced this with their

doctor?'

Yes. We have talked a number of times about doctors responses to

fatigue in a liver support group meeting I participate in. One of

the most quotable comments was 'when I mention fatigue to my doctor I

see his eyes glaze over..' I am sure they hear it every day, and

sometimes it feels like they don't want to talk about it - maybe

because they really don't know how to fix it. Sometimes they seem to

randomly offer possible causes.

In my case I believe that my UC is currently a greater factor in my

fatigue than PSC (even though my UC is not flaring). Tests in the

past have shown alot of inflation even when I felt like the UC was

under good control. Historically when my prednisone is lowered to

10mg/day, my UC flares. But recently I was doing better than normal,

and my prednisone was lowered to 10mg/day without a flare. However,

my energy took a large drop within a week or so and stayed low. I

asked to go back to 12.5, which was approved, and my energy has made

a little bit of a comeback.

I thought for a while whether I would be better off on lower

prednisone long term vs the energy level. At this time the fact that

I recently returned to work and am trying to stay working swayed me.

I am wondering if there is good information on what causes fatigue

with liver disease? Fatigue seems to be the most universal symptom

with liver disease, but I have never heard an explanation of why that

is the case. If the mechanism that causes fatigue is understood,

then maybe there could be a test to confirm if it is liver induced

fatigue (vs. depression, UC, etc.)?

Darryl

PSC UC 12/96, Tx 2/02, PSC again 04

[Guest guest]

I too am going down on the prednisone. I'm at 7 mg per day now. When I went

from 9 mg to 8 mg that's when my energy level started going down. I doubt my

doctor would want to keep me on a higher dose of prednisone solely for my

energy level. But it's something I'll talk to him about.

>In my case I believe that my UC is currently a greater factor in my

>fatigue than PSC (even though my UC is not flaring). Tests in the

>past have shown alot of inflation even when I felt like the UC was

>under good control. Historically when my prednisone is lowered to

>10mg/day, my UC flares. But recently I was doing better than normal,

>and my prednisone was lowered to 10mg/day without a flare. However,

>my energy took a large drop within a week or so and stayed low. I

>asked to go back to 12.5, which was approved, and my energy has made

>a little bit of a comeback.

>

>I thought for a while whether I would be better off on lower

>prednisone long term vs the energy level. At this time the fact that

>I recently returned to work and am trying to stay working swayed me.

>

>I am wondering if there is good information on what causes fatigue

>with liver disease? Fatigue seems to be the most universal symptom

>with liver disease, but I have never heard an explanation of why that

>is the case. If the mechanism that causes fatigue is understood,

>then maybe there could be a test to confirm if it is liver induced

>fatigue (vs. depression, UC, etc.)?

>

>Darryl

>PSC UC 12/96, Tx 2/02, PSC again 04

>

>

_________________________________________________________________

Get a FREE small business Web site and more from Microsoft® Office Live!

http://clk.atdmt.com/MRT/go/aub0930003811mrt/direct/01/