Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Hi Cheryl; About your question concerning high cholesterol and whether statins are safe and effective, more is known about this in PBC than in PSC. In PBC the limited results so far look promising: http://www.smw.ch/docs/pdf200x/2008/29/smw-12311.pdf So sorry to hear about all your health problems! Best regards, Dave R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Hi Cheryl; About your question concerning high cholesterol and whether statins are safe and effective, more is known about this in PBC than in PSC. In PBC the limited results so far look promising: http://www.smw.ch/docs/pdf200x/2008/29/smw-12311.pdf So sorry to hear about all your health problems! Best regards, Dave R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Hi Cheryl; About your question concerning high cholesterol and whether statins are safe and effective, more is known about this in PBC than in PSC. In PBC the limited results so far look promising: http://www.smw.ch/docs/pdf200x/2008/29/smw-12311.pdf So sorry to hear about all your health problems! Best regards, Dave R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I was put on Vytorin when my cholesterol was close to 300. Within 45 days it was down to 130. I also changed my diet, but I think as you indicated, the diet didn’t impact it that much. I stayed on Vytorin until I was transplanted. After transplant my cholesterol returned to normal without medication. From: [mailto: ] On Behalf Of cherylberg58 Sent: Thursday, February 19, 2009 11:16 PM To: Subject: Cheryl in Idaho Hey all my old friends, I've been pretty sick and in a lot of pain and went inactive on most things. I have a question that I can't find an answer to and remember someone discussing this in past years. I've recently been dx with high cholesterol. I am in the process of moving to a new Hepatologist and have no doctor to ask. I did read that high cholesterol occurs in people with cholestatic liver diseases. The article by Palmer also said that it did not lead to heart disease and would not repsond to change in diet. What I want to know is whether or not it responds to statins and if anyone else has had this problem? I am having many additional health problems and am now suffering from pedal edema and ascities, but it is responsive to diuretics. I hope all are well, Thanks for any help you might have for me. Cheryl in ID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I was put on Vytorin when my cholesterol was close to 300. Within 45 days it was down to 130. I also changed my diet, but I think as you indicated, the diet didn’t impact it that much. I stayed on Vytorin until I was transplanted. After transplant my cholesterol returned to normal without medication. From: [mailto: ] On Behalf Of cherylberg58 Sent: Thursday, February 19, 2009 11:16 PM To: Subject: Cheryl in Idaho Hey all my old friends, I've been pretty sick and in a lot of pain and went inactive on most things. I have a question that I can't find an answer to and remember someone discussing this in past years. I've recently been dx with high cholesterol. I am in the process of moving to a new Hepatologist and have no doctor to ask. I did read that high cholesterol occurs in people with cholestatic liver diseases. The article by Palmer also said that it did not lead to heart disease and would not repsond to change in diet. What I want to know is whether or not it responds to statins and if anyone else has had this problem? I am having many additional health problems and am now suffering from pedal edema and ascities, but it is responsive to diuretics. I hope all are well, Thanks for any help you might have for me. Cheryl in ID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 , thank you for the timely response. I will take my statin (which I began last night) and then discuss it with new Hep on Mar 2. I am still trying to find answer for my nose pain which has spread to my ears, face, throat, scalp, severe headaches, and all over body pain. thery are thinking Relapsing Polychondritis or Wegener's Granulamatosis or ? this is worse than trying to get PSC dx. Take care, Cheryl Re: Cheryl in Idaho > Hi Cheryl; > > About your question concerning high cholesterol and whether statins are > safe and effective, more is known about this in PBC than in PSC. In PBC > the limited results so far look promising: > > http://www.smw.ch/docs/pdf200x/2008/29/smw-12311.pdf > > So sorry to hear about all your health problems! > > Best regards, > > Dave R. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 , thank you for the timely response. I will take my statin (which I began last night) and then discuss it with new Hep on Mar 2. I am still trying to find answer for my nose pain which has spread to my ears, face, throat, scalp, severe headaches, and all over body pain. thery are thinking Relapsing Polychondritis or Wegener's Granulamatosis or ? this is worse than trying to get PSC dx. Take care, Cheryl Re: Cheryl in Idaho > Hi Cheryl; > > About your question concerning high cholesterol and whether statins are > safe and effective, more is known about this in PBC than in PSC. In PBC > the limited results so far look promising: > > http://www.smw.ch/docs/pdf200x/2008/29/smw-12311.pdf > > So sorry to hear about all your health problems! > > Best regards, > > Dave R. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 , thank you for the timely response. I will take my statin (which I began last night) and then discuss it with new Hep on Mar 2. I am still trying to find answer for my nose pain which has spread to my ears, face, throat, scalp, severe headaches, and all over body pain. thery are thinking Relapsing Polychondritis or Wegener's Granulamatosis or ? this is worse than trying to get PSC dx. Take care, Cheryl Re: Cheryl in Idaho > Hi Cheryl; > > About your question concerning high cholesterol and whether statins are > safe and effective, more is known about this in PBC than in PSC. In PBC > the limited results so far look promising: > > http://www.smw.ch/docs/pdf200x/2008/29/smw-12311.pdf > > So sorry to hear about all your health problems! > > Best regards, > > Dave R. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Joe, thank you for your personal experience. I too used to have low cholesterol. It was one of the few things I could feel smug about healthwise. Now all that's left is being thin. I don't remember you from when I used to be active. Where did you receive your transplant? I am planning on Salt Lake City, Utah, but I have some other health issues that are making me very nervous so I'm thinking I might have to hit Mayo in Minn. We'll see. SLC would be so much better. Three hour drive, and lots and lots of family members in the area. Cheryl UC '00, PSC '01, 50 years old Cheryl in Idaho > > > > Hey all my old friends, > I've been pretty sick and in a lot of pain and went inactive on most > things. I have a question that I can't find an answer to and remember > someone discussing this in past years. I've recently been dx with high > cholesterol. I am in the process of moving to a new Hepatologist and > have no doctor to ask. I did read that high cholesterol occurs in > people with cholestatic liver diseases. The article by Palmer > also said that it did not lead to heart disease and would not repsond > to change in diet. What I want to know is whether or not it responds to > statins and if anyone else has had this problem? I am having many > additional health problems and am now suffering from pedal edema and > ascities, but it is responsive to diuretics. I hope all are well, > Thanks for any help you might have for me. Cheryl in ID > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Joe, thank you for your personal experience. I too used to have low cholesterol. It was one of the few things I could feel smug about healthwise. Now all that's left is being thin. I don't remember you from when I used to be active. Where did you receive your transplant? I am planning on Salt Lake City, Utah, but I have some other health issues that are making me very nervous so I'm thinking I might have to hit Mayo in Minn. We'll see. SLC would be so much better. Three hour drive, and lots and lots of family members in the area. Cheryl UC '00, PSC '01, 50 years old Cheryl in Idaho > > > > Hey all my old friends, > I've been pretty sick and in a lot of pain and went inactive on most > things. I have a question that I can't find an answer to and remember > someone discussing this in past years. I've recently been dx with high > cholesterol. I am in the process of moving to a new Hepatologist and > have no doctor to ask. I did read that high cholesterol occurs in > people with cholestatic liver diseases. The article by Palmer > also said that it did not lead to heart disease and would not repsond > to change in diet. What I want to know is whether or not it responds to > statins and if anyone else has had this problem? I am having many > additional health problems and am now suffering from pedal edema and > ascities, but it is responsive to diuretics. I hope all are well, > Thanks for any help you might have for me. Cheryl in ID > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Joe, thank you for your personal experience. I too used to have low cholesterol. It was one of the few things I could feel smug about healthwise. Now all that's left is being thin. I don't remember you from when I used to be active. Where did you receive your transplant? I am planning on Salt Lake City, Utah, but I have some other health issues that are making me very nervous so I'm thinking I might have to hit Mayo in Minn. We'll see. SLC would be so much better. Three hour drive, and lots and lots of family members in the area. Cheryl UC '00, PSC '01, 50 years old Cheryl in Idaho > > > > Hey all my old friends, > I've been pretty sick and in a lot of pain and went inactive on most > things. I have a question that I can't find an answer to and remember > someone discussing this in past years. I've recently been dx with high > cholesterol. I am in the process of moving to a new Hepatologist and > have no doctor to ask. I did read that high cholesterol occurs in > people with cholestatic liver diseases. The article by Palmer > also said that it did not lead to heart disease and would not repsond > to change in diet. What I want to know is whether or not it responds to > statins and if anyone else has had this problem? I am having many > additional health problems and am now suffering from pedal edema and > ascities, but it is responsive to diuretics. I hope all are well, > Thanks for any help you might have for me. Cheryl in ID > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Cheryl - I had extremely high cholesterol a couple of years ago. I have always had very good numbers until then. My GI said it's because my liver is not doing it's job. My triglycerides were over 700! I was put on Wellchol and Zetia and it went down to pretty close to normal. Good luck, Liz in CT (listed in 12/07) > Hey all my old friends, > . I've recently been dx with high > cholesterol. I am in the process of moving to a new Hepatologist and > have no doctor to ask. I did read that high cholesterol occurs in > people with cholestatic liver diseases. T> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Cheryl - I had extremely high cholesterol a couple of years ago. I have always had very good numbers until then. My GI said it's because my liver is not doing it's job. My triglycerides were over 700! I was put on Wellchol and Zetia and it went down to pretty close to normal. Good luck, Liz in CT (listed in 12/07) > Hey all my old friends, > . I've recently been dx with high > cholesterol. I am in the process of moving to a new Hepatologist and > have no doctor to ask. I did read that high cholesterol occurs in > people with cholestatic liver diseases. T> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Cheryl - I had extremely high cholesterol a couple of years ago. I have always had very good numbers until then. My GI said it's because my liver is not doing it's job. My triglycerides were over 700! I was put on Wellchol and Zetia and it went down to pretty close to normal. Good luck, Liz in CT (listed in 12/07) > Hey all my old friends, > . I've recently been dx with high > cholesterol. I am in the process of moving to a new Hepatologist and > have no doctor to ask. I did read that high cholesterol occurs in > people with cholestatic liver diseases. T> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Cheryl, I am new to the group. I did things a little backward. I waited until after transplant to join. I was transplanted at Northwestern in Chicago. It is three hours from home and I was impressed with their knowledge of PSC. I had my choice, but my local GI recommended Northwestern or U of I. Northwestern could get me into their pre-transplant clinic sooner so I chose them. Both are highly rated. From: [mailto: ] On Behalf Of Logan Berg Sent: Friday, February 20, 2009 10:09 AM To: Subject: RE: Cheryl in Idaho Joe, thank you for your personal experience. I too used to have low cholesterol. It was one of the few things I could feel smug about healthwise. Now all that's left is being thin. I don't remember you from when I used to be active. Where did you receive your transplant? I am planning on Salt Lake City, Utah, but I have some other health issues that are making me very nervous so I'm thinking I might have to hit Mayo in Minn. We'll see. SLC would be so much better. Three hour drive, and lots and lots of family members in the area. Cheryl UC '00, PSC '01, 50 years old Cheryl in Idaho > > > > Hey all my old friends, > I've been pretty sick and in a lot of pain and went inactive on most > things. I have a question that I can't find an answer to and remember > someone discussing this in past years. I've recently been dx with high > cholesterol. I am in the process of moving to a new Hepatologist and > have no doctor to ask. I did read that high cholesterol occurs in > people with cholestatic liver diseases. The article by Palmer > also said that it did not lead to heart disease and would not repsond > to change in diet. What I want to know is whether or not it responds to > statins and if anyone else has had this problem? I am having many > additional health problems and am now suffering from pedal edema and > ascities, but it is responsive to diuretics. I hope all are well, > Thanks for any help you might have for me. Cheryl in ID > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Cheryl, I am new to the group. I did things a little backward. I waited until after transplant to join. I was transplanted at Northwestern in Chicago. It is three hours from home and I was impressed with their knowledge of PSC. I had my choice, but my local GI recommended Northwestern or U of I. Northwestern could get me into their pre-transplant clinic sooner so I chose them. Both are highly rated. From: [mailto: ] On Behalf Of Logan Berg Sent: Friday, February 20, 2009 10:09 AM To: Subject: RE: Cheryl in Idaho Joe, thank you for your personal experience. I too used to have low cholesterol. It was one of the few things I could feel smug about healthwise. Now all that's left is being thin. I don't remember you from when I used to be active. Where did you receive your transplant? I am planning on Salt Lake City, Utah, but I have some other health issues that are making me very nervous so I'm thinking I might have to hit Mayo in Minn. We'll see. SLC would be so much better. Three hour drive, and lots and lots of family members in the area. Cheryl UC '00, PSC '01, 50 years old Cheryl in Idaho > > > > Hey all my old friends, > I've been pretty sick and in a lot of pain and went inactive on most > things. I have a question that I can't find an answer to and remember > someone discussing this in past years. I've recently been dx with high > cholesterol. I am in the process of moving to a new Hepatologist and > have no doctor to ask. I did read that high cholesterol occurs in > people with cholestatic liver diseases. The article by Palmer > also said that it did not lead to heart disease and would not repsond > to change in diet. What I want to know is whether or not it responds to > statins and if anyone else has had this problem? I am having many > additional health problems and am now suffering from pedal edema and > ascities, but it is responsive to diuretics. I hope all are well, > Thanks for any help you might have for me. Cheryl in ID > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Cheryl, I am new to the group. I did things a little backward. I waited until after transplant to join. I was transplanted at Northwestern in Chicago. It is three hours from home and I was impressed with their knowledge of PSC. I had my choice, but my local GI recommended Northwestern or U of I. Northwestern could get me into their pre-transplant clinic sooner so I chose them. Both are highly rated. From: [mailto: ] On Behalf Of Logan Berg Sent: Friday, February 20, 2009 10:09 AM To: Subject: RE: Cheryl in Idaho Joe, thank you for your personal experience. I too used to have low cholesterol. It was one of the few things I could feel smug about healthwise. Now all that's left is being thin. I don't remember you from when I used to be active. Where did you receive your transplant? I am planning on Salt Lake City, Utah, but I have some other health issues that are making me very nervous so I'm thinking I might have to hit Mayo in Minn. We'll see. SLC would be so much better. Three hour drive, and lots and lots of family members in the area. Cheryl UC '00, PSC '01, 50 years old Cheryl in Idaho > > > > Hey all my old friends, > I've been pretty sick and in a lot of pain and went inactive on most > things. I have a question that I can't find an answer to and remember > someone discussing this in past years. I've recently been dx with high > cholesterol. I am in the process of moving to a new Hepatologist and > have no doctor to ask. I did read that high cholesterol occurs in > people with cholestatic liver diseases. The article by Palmer > also said that it did not lead to heart disease and would not repsond > to change in diet. What I want to know is whether or not it responds to > statins and if anyone else has had this problem? I am having many > additional health problems and am now suffering from pedal edema and > ascities, but it is responsive to diuretics. I hope all are well, > Thanks for any help you might have for me. Cheryl in ID > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Joe, There certainly isn't any protocol for joining this group. Many others have joined post transplant in past years. Many people lose interest post transplant, but those who stay are a great help to those who have not been " born again. " I'm glad you were able to find a excellent center so close to home. SLC has a very good track record and its wait-list is quite short. I am just developing so many other health problems that I am not sure if they can handle me. My original hep died two years ago from a brain tumor. I haven't found someone as good or who has the same interest in me since then. So now I am moving on to Utah. While I have ascities and weight loss and muscle wasting I am not jaundice. I don't tolerate many drugs and have some undiagnosed rheumatological problem that is causing me severe pain. I was dead set on going to Mayo clinic and then the economy went south and you know. So I'm seeing a new round of doctors. It's nice to meet you. Cheryl ID 50 PSC '01, UC '00. ----Original message----- From: " Joe Berry " joe-berry@... Date: Fri, 20 Feb 2009 19:09:19 -0700 To: Subject: RE: Cheryl in Idaho > Cheryl, > > > > I am new to the group. I did things a little backward. I waited until > after transplant to join. I was transplanted at Northwestern in Chicago. > It is three hours from home and I was impressed with their knowledge of PSC. > I had my choice, but my local GI recommended Northwestern or U of I. > Northwestern could get me into their pre-transplant clinic sooner so I chose > them. Both are highly rated. > > > > > > > > _____ > > From: [mailto: ] On > Behalf Of Logan Berg > Sent: Friday, February 20, 2009 10:09 AM > To: > Subject: RE: Cheryl in Idaho > > > > Joe, > thank you for your personal experience. I too used to have low cholesterol. > It was one of the few things I could feel smug about healthwise. Now all > that's left is being thin. I don't remember you from when I used to be > active. Where did you receive your transplant? I am planning on Salt Lake > City, Utah, but I have some other health issues that are making me very > nervous so I'm thinking I might have to hit Mayo in Minn. We'll see. SLC > would be so much better. Three hour drive, and lots and lots of family > members in the area. Cheryl UC '00, PSC '01, 50 years old > Cheryl in Idaho > > > > > > > > Hey all my old friends, > > I've been pretty sick and in a lot of pain and went inactive on most > > things. I have a question that I can't find an answer to and remember > > someone discussing this in past years. I've recently been dx with high > > cholesterol. I am in the process of moving to a new Hepatologist and > > have no doctor to ask. I did read that high cholesterol occurs in > > people with cholestatic liver diseases. The article by Palmer > > also said that it did not lead to heart disease and would not repsond > > to change in diet. What I want to know is whether or not it responds to > > statins and if anyone else has had this problem? I am having many > > additional health problems and am now suffering from pedal edema and > > ascities, but it is responsive to diuretics. I hope all are well, > > Thanks for any help you might have for me. Cheryl in ID > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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