Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 Welcome, Lee Also from WA state, Whidbey Island. Husband diagnosed with PSC in 2005. Our heating bills are out of sight. Brad's also cold and tired. Ursodiol seems to have helped with energy. Brad's lost a lot of weight which I think contributes as well. But, we've never been able to get an MD to pinpoint any particular cause for the coldness which is a constant. There are many knowledgeable folks at this site who can offer you information. Regards, DianeC husband Brad UC/J-Pouch 1982 PSC 2005 Cholangiocarcinoma 2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 > > Welcome, Lee Hi Lee Greetings from across the Pacific Ocean in New Zealand. Sorry I can't help with the 'cold'. I (and I am sure a great many of us in the group) know about fatigue. In a way I am was very pleased to get a diagnoses of PSC as I was always tired and there seemed to be no rhyme or reason for it, as I was (and still am) very healthy. Just think of yourself as a Ferrari running on dirty fuel!!!...grin. Best wishes and welcome to a great community. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 Welcome to the group, but sorry about your diagnosis. I don't know what your liver enzymes are,but a lack of energy is one of most PSC'rs or anyone with liver issues top complaints. Usually energy decreases as the day goes on. I also feel chilled on a pretty regular bases except at night when I have the night sweats. These were part of my list of symptoms that I went to my doctor with when I was diagnosised. Good Luck, PSC 5/2007 listed > > Hello all you wonderful people. > This is my first time of getting into the group > Background: 65 year old,retired, married, lots of grandkids, live in > Washington State. > > I found out the I had PSC in July of 2007. We think that I have had it > for at least 2 years. The main thing that I want to find out is being > cold all the time. 2nd thing is the lack of energy all the time. Some > days it is worse than other. > > Well lets start with this. THANKS > > leegrilley > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Hello Lee and Diane, My husband Tom is also very cold all the time and likes the heater running at about 78 degrees. Huge heat bills! He has recently lost a lot of muscle mass in his arms and legs and just this week has had itchy skin but only on his extremities (arms and legs). His Alk Phos is also elevated. He goes back on January 14th for blood work but I wonder if he should go sooner due to the itching. It has been 5 years since his last ERCP. He has already done an initial intake and physical with the liver team at the University of Washington so am guessing his GP would have his ERCP done up there. Nice to " meet " all of you local Washington PSC'rs. Husband Tom - 42 yrs, dx PSC 1994 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 I would suggest that he go back for another erspallison_mattich wrote: Hello Lee and Diane,My husband Tom is also very cold all the time and likes the heater running at about 78 degrees. Huge heat bills! He has recently lost a lot of muscle mass in his arms and legs and just this week has had itchy skin but only on his extremities (arms and legs). His Alk Phos is also elevated. He goes back on January 14th for blood work but I wonder if he should go sooner due to the itching. It has been 5 years since his last ERCP. He has already done an initial intake and physical with the liver team at the University of Washington so am guessing his GP would have his ERCP done up there. Nice to "meet" all of you local Washington PSC'rs. Husband Tom - 42 yrs, dx PSC 1994> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 I also am going to the U of W and I have my next exam on Thur the 10th, I will have better and more information on friday. By the way where are you? I am in Federal Way Lee G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 What about being really warm and tired? Does anybody else have any problems with that? Today is Tuesday and I have been really warm since Saturday, weak, and also nauseaus and lightheaded. I mean, so warm that I had to open the window and run the fan when my heat wasn't even on, and when it wasn't even any extreme weather or anything. I take my temp with a digital thermometer and it reads like a degree or so below normal. I don't know what's going on, but I see my gi tomorrow so I'll ask him. And leave some PSC brochures in his waiting room! Seems like more than a few of you have been cold and tired, but I just wanted to make sure that I wasn't the only one who felt the opposite. At least I hope I'm not. > > I also am going to the U of W and I have my next exam on Thur the > 10th, I will have better and more information on friday. By the way > where are you? I am in Federal Way > > Lee G > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Hi neighbor! We actually lived in Federal Way when Tom was diagnosed in 1994 with PSC. We now live in Puyallup. Tom has just recently started having all over body itching but blood work does not show elevated bilirubin. However, three liver function tests are high: SGOT is 55, Alk Phos is 239 and SGPT is 112. It has been nearly 5 years since his last ERCP so he is nervous that these elevated levels will indicate time for another. He is prone to pancreatitis with each ERCP which lands him in the hospital for a week in extreme pain. He has been relatively asymptomatic until about 4 years ago when he developed diabetes due to PSC and fatigue. He takes nearly 3200 mg of Ursodial daily, along with Vitamin C, high blood pressure medication. He has not been officially diagnosed with IBD or Crohns however, has had such difficulty with loose bowel movements for years. He keeps trying to blame his excessive gas on the kids! : ) Add to that always being cold now and visible loss of muscle mass in his arms and legs. No jaundice however or URQ pain. So we are not really sure where the next step of this journey will lead, especially when it is around the 12-15 year mark that most are indicating liver failure and listing process begin. I guess we are waiting for the other shoe to drop. Tell me about yourself and your PSC? You are welcome to communicate privately with us as well at blingaling@... and Tom Mattich (Tom dx PSC 1994, now age 42) Puyallup, WA > > I also am going to the U of W and I have my next exam on Thur the > 10th, I will have better and more information on friday. By the way > where are you? I am in Federal Way > > Lee G > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2008 Report Share Posted January 9, 2008 Did anyone mention to you that there is a possibility of starting antibiotics a few days before the ERCP. This might avoid the pancreatitis. Regards, Chaim Boermeester, Israel From: [mailto: ] On Behalf Of allison_mattich Sent: Wednesday, January 09, 2008 10:17 To: Subject: Re: being cold, tired Hi neighbor! We actually lived in Federal Way when Tom was diagnosed in 1994 with PSC. We now live in Puyallup. Tom has just recently started having all over body itching but blood work does not show elevated bilirubin. However, three liver function tests are high: SGOT is 55, Alk Phos is 239 and SGPT is 112. It has been nearly 5 years since his last ERCP so he is nervous that these elevated levels will indicate time for another. He is prone to pancreatitis with each ERCP which lands him in the hospital for a week in extreme pain. He has been relatively asymptomatic until about 4 years ago when he developed diabetes due to PSC and fatigue. He takes nearly 3200 mg of Ursodial daily, along with Vitamin C, high blood pressure medication. He has not been officially diagnosed with IBD or Crohns however, has had such difficulty with loose bowel movements for years. He keeps trying to blame his excessive gas on the kids! : ) Add to that always being cold now and visible loss of muscle mass in his arms and legs. No jaundice however or URQ pain. So we are not really sure where the next step of this journey will lead, especially when it is around the 12-15 year mark that most are indicating liver failure and listing process begin. I guess we are waiting for the other shoe to drop. Tell me about yourself and your PSC? You are welcome to communicate privately with us as well at blingaling (AT) comcast (DOT) net and Tom Mattich (Tom dx PSC 1994, now age 42) Puyallup, WA > > I also am going to the U of W and I have my next exam on Thur the > 10th, I will have better and more information on friday. By the way > where are you? I am in Federal Way > > Lee G > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Hi, I have been on antibiotics now for three years. My doctor has me take two dose of my antibiotic the morning of an ercp which I have ever three months for the last three years as well and it does avoid pancreatitis a long with infections. If you dont take oral they will usely give you an antibiotic in the IV. good luck from dianeChaim Boermeester wrote: Did anyone mention to you that there is a possibility of starting antibiotics a few days before the ERCP. This might avoid the pancreatitis. Regards, Chaim Boermeester, Israel From: [mailto: ] On Behalf Of allison_mattichSent: Wednesday, January 09, 2008 10:17To: Subject: Re: being cold, tired Hi neighbor! We actually lived in Federal Way when Tom was diagnosed in 1994 with PSC. We now live in Puyallup. Tom has just recently started having all over body itching but blood work does not show elevated bilirubin. However, three liver function tests are high: SGOT is 55, Alk Phos is 239 and SGPT is 112. It has been nearly 5 years since his last ERCP so he is nervous that these elevated levels will indicate time for another. He is prone to pancreatitis with each ERCP which lands him in the hospital for a week in extreme pain. He has been relatively asymptomatic until about 4 years ago when he developed diabetes due to PSC and fatigue. He takes nearly 3200 mg of Ursodial daily, along with Vitamin C, high blood pressure medication. He has not been officially diagnosed with IBD or Crohns however, has had such difficulty with loose bowel movements for years. He keeps trying to blame his excessive gas on the kids! : ) Add to that always being cold now and visible loss of muscle mass in his arms and legs. No jaundice however or URQ pain. So we are not really sure where the next step of this journey will lead, especially when it is around the 12-15 year mark that most are indicating liver failure and listing process begin. I guess we are waiting for the other shoe to drop.Tell me about yourself and your PSC? You are welcome to communicate privately with us as well at blingaling (AT) comcast (DOT) netAllison and Tom Mattich(Tom dx PSC 1994, now age 42)Puyallup, WA>> I also am going to the U of W and I have my next exam on Thur the > 10th, I will have better and more information on friday. By the way > where are you? I am in Federal Way > > Lee G> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Hi, I have been on antibiotics now for three years. My doctor has me take two dose of my antibiotic the morning of an ercp which I have ever three months for the last three years as well and it does avoid pancreatitis a long with infections. If you dont take oral they will usely give you an antibiotic in the IV. good luck from dianeChaim Boermeester wrote: Did anyone mention to you that there is a possibility of starting antibiotics a few days before the ERCP. This might avoid the pancreatitis. Regards, Chaim Boermeester, Israel From: [mailto: ] On Behalf Of allison_mattichSent: Wednesday, January 09, 2008 10:17To: Subject: Re: being cold, tired Hi neighbor! We actually lived in Federal Way when Tom was diagnosed in 1994 with PSC. We now live in Puyallup. Tom has just recently started having all over body itching but blood work does not show elevated bilirubin. However, three liver function tests are high: SGOT is 55, Alk Phos is 239 and SGPT is 112. It has been nearly 5 years since his last ERCP so he is nervous that these elevated levels will indicate time for another. He is prone to pancreatitis with each ERCP which lands him in the hospital for a week in extreme pain. He has been relatively asymptomatic until about 4 years ago when he developed diabetes due to PSC and fatigue. He takes nearly 3200 mg of Ursodial daily, along with Vitamin C, high blood pressure medication. He has not been officially diagnosed with IBD or Crohns however, has had such difficulty with loose bowel movements for years. He keeps trying to blame his excessive gas on the kids! : ) Add to that always being cold now and visible loss of muscle mass in his arms and legs. No jaundice however or URQ pain. So we are not really sure where the next step of this journey will lead, especially when it is around the 12-15 year mark that most are indicating liver failure and listing process begin. I guess we are waiting for the other shoe to drop.Tell me about yourself and your PSC? You are welcome to communicate privately with us as well at blingaling (AT) comcast (DOT) netAllison and Tom Mattich(Tom dx PSC 1994, now age 42)Puyallup, WA>> I also am going to the U of W and I have my next exam on Thur the > 10th, I will have better and more information on friday. By the way > where are you? I am in Federal Way > > Lee G> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 This year I have experience warmth but prior to this year I have been cold so I am not sure it is psc or being a womensikeea_graham wrote: What about being really warm and tired? Does anybody else have any problems with that? Today is Tuesday and I have been really warm since Saturday, weak, and also nauseaus and lightheaded. I mean, so warm that I had to open the window and run the fan when my heat wasn't even on, and when it wasn't even any extreme weather or anything. I take my temp with a digital thermometer and it reads like a degree or so below normal. I don't know what's going on, but I see my gi tomorrow so I'll ask him. And leave some PSC brochures in his waiting room! Seems like more than a few of you have been cold and tired, but I just wanted to make sure that I wasn't the only one who felt the opposite. At least I hope I'm not. >> I also am going to the U of W and I have my next exam on Thur the > 10th, I will have better and more information on friday. By the way > where are you? I am in Federal Way > > Lee G> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
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