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Not doing too well

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Hello all,

I have read most of the messages since joining last week, and have to

admit learned more than I could have ever gleaned out of the many

doctors I have seen.

I went to see a Hep doc in San Francisco back in January. I was

actually feeling better; the nausea was minimal, the pain was down,

and the fatigue was better. When I returned home to New Mexico, all

my symptoms came back and then some. Lately I've been getting

extreme hot flashes followed by intense chills lasting sometimes for

hours. I increased my compounded estrogen cream but it didn't help.

I am up to four times the dose and still no help. I'm getting severe

pain on the right side of my abdomen when I eat and then intense

nausea.

All the doctors I have seen just tell me that I will get sicker and

then need a transplant. They didn't bother to say that the PSC would

be causing any of my symptoms. Have any of you experienced the hot

flashes followed by the chills? Could really use some help here.

Thanks,

Enid in NM

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Enid,

I’m sorry to be the bearer of the news, but chills, RUQ pain,

and nausea might indicate a bout of cholangitis. Has your Dr. mentioned to

you when it is time to seek medical help in the middle of a cholangitis bout? Are

you running a fever at all (even low grade might indicate cholangitis). I

would recommend that you place a call to your Dr. and describe your symptoms

and ask how you should proceed.

I’m sure that others with some more experience will be along

shortly.

Rick

From:

[mailto: ] On Behalf

Of offgridaudio

Sent: Wednesday, February 25, 2009 6:07 PM

To:

Subject: Not doing too well

Hello all,

I have read most of the messages since joining last week, and have to

admit learned more than I could have ever gleaned out of the many

doctors I have seen.

I went to see a Hep doc in San Francisco back in January. I was

actually feeling better; the nausea was minimal, the pain was down,

and the fatigue was better. When I returned home to New Mexico, all

my symptoms came back and then some. Lately I've been getting

extreme hot flashes followed by intense chills lasting sometimes for

hours. I increased my compounded estrogen cream but it didn't help.

I am up to four times the dose and still no help. I'm getting severe

pain on the right side of my abdomen when I eat and then intense

nausea.

All the doctors I have seen just tell me that I will get sicker and

then need a transplant. They didn't bother to say that the PSC would

be causing any of my symptoms. Have any of you experienced the hot

flashes followed by the chills? Could really use some help here.

Thanks,

Enid in NM

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Enid,

I’m sorry to be the bearer of the news, but chills, RUQ pain,

and nausea might indicate a bout of cholangitis. Has your Dr. mentioned to

you when it is time to seek medical help in the middle of a cholangitis bout? Are

you running a fever at all (even low grade might indicate cholangitis). I

would recommend that you place a call to your Dr. and describe your symptoms

and ask how you should proceed.

I’m sure that others with some more experience will be along

shortly.

Rick

From:

[mailto: ] On Behalf

Of offgridaudio

Sent: Wednesday, February 25, 2009 6:07 PM

To:

Subject: Not doing too well

Hello all,

I have read most of the messages since joining last week, and have to

admit learned more than I could have ever gleaned out of the many

doctors I have seen.

I went to see a Hep doc in San Francisco back in January. I was

actually feeling better; the nausea was minimal, the pain was down,

and the fatigue was better. When I returned home to New Mexico, all

my symptoms came back and then some. Lately I've been getting

extreme hot flashes followed by intense chills lasting sometimes for

hours. I increased my compounded estrogen cream but it didn't help.

I am up to four times the dose and still no help. I'm getting severe

pain on the right side of my abdomen when I eat and then intense

nausea.

All the doctors I have seen just tell me that I will get sicker and

then need a transplant. They didn't bother to say that the PSC would

be causing any of my symptoms. Have any of you experienced the hot

flashes followed by the chills? Could really use some help here.

Thanks,

Enid in NM

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Share on other sites

Enid,

I’m sorry to be the bearer of the news, but chills, RUQ pain,

and nausea might indicate a bout of cholangitis. Has your Dr. mentioned to

you when it is time to seek medical help in the middle of a cholangitis bout? Are

you running a fever at all (even low grade might indicate cholangitis). I

would recommend that you place a call to your Dr. and describe your symptoms

and ask how you should proceed.

I’m sure that others with some more experience will be along

shortly.

Rick

From:

[mailto: ] On Behalf

Of offgridaudio

Sent: Wednesday, February 25, 2009 6:07 PM

To:

Subject: Not doing too well

Hello all,

I have read most of the messages since joining last week, and have to

admit learned more than I could have ever gleaned out of the many

doctors I have seen.

I went to see a Hep doc in San Francisco back in January. I was

actually feeling better; the nausea was minimal, the pain was down,

and the fatigue was better. When I returned home to New Mexico, all

my symptoms came back and then some. Lately I've been getting

extreme hot flashes followed by intense chills lasting sometimes for

hours. I increased my compounded estrogen cream but it didn't help.

I am up to four times the dose and still no help. I'm getting severe

pain on the right side of my abdomen when I eat and then intense

nausea.

All the doctors I have seen just tell me that I will get sicker and

then need a transplant. They didn't bother to say that the PSC would

be causing any of my symptoms. Have any of you experienced the hot

flashes followed by the chills? Could really use some help here.

Thanks,

Enid in NM

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Enid,

Why are you on Estrogen? Does your liver specialist know this? Mine absolutely

forbids any

HRT, says it's very dangerous for people with compromised livers. Maybe the

reason you are

having pain right now ????

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