Not doing too well

[Guest guest]

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

[Guest guest]

Hi I was diagnosed with PSC in 2004 and have had an ERCP to balloon my bile ducts and have had elevated liver enzymes for years. I've been reading on the posts about "bouts of cholangitis" but feel very naïve because I'm not sure what that really consists of and how I will know if I am experiencing that. I often experience discomfort in my upper right side quadrant and have as cites but do those symptoms constitute as cholangitis or are they just part of the disease. Thanks for the help.Serbrina L.A./UC '01, PSC '04Sent via BlackBerry by AT&TFrom: "Rick Kamp" Date: Wed, 25 Feb 2009 18:55:32 -0500To: < >Subject: RE: Not doing too well 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 offgridaudioSent: Wednesday, February 25, 2009 6:07 PMTo: 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

[Guest guest]

Hi I was diagnosed with PSC in 2004 and have had an ERCP to balloon my bile ducts and have had elevated liver enzymes for years. I've been reading on the posts about "bouts of cholangitis" but feel very naïve because I'm not sure what that really consists of and how I will know if I am experiencing that. I often experience discomfort in my upper right side quadrant and have as cites but do those symptoms constitute as cholangitis or are they just part of the disease. Thanks for the help.Serbrina L.A./UC '01, PSC '04Sent via BlackBerry by AT&TFrom: "Rick Kamp" Date: Wed, 25 Feb 2009 18:55:32 -0500To: < >Subject: RE: Not doing too well 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 offgridaudioSent: Wednesday, February 25, 2009 6:07 PMTo: 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

[Guest guest]

Hi I was diagnosed with PSC in 2004 and have had an ERCP to balloon my bile ducts and have had elevated liver enzymes for years. I've been reading on the posts about "bouts of cholangitis" but feel very naïve because I'm not sure what that really consists of and how I will know if I am experiencing that. I often experience discomfort in my upper right side quadrant and have as cites but do those symptoms constitute as cholangitis or are they just part of the disease. Thanks for the help.Serbrina L.A./UC '01, PSC '04Sent via BlackBerry by AT&TFrom: "Rick Kamp" Date: Wed, 25 Feb 2009 18:55:32 -0500To: < >Subject: RE: Not doing too well 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 offgridaudioSent: Wednesday, February 25, 2009 6:07 PMTo: 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