Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Dear ; Small-duct PSC appears to run a more benign course than classic PSC. While it can evolve into large-duct PSC it seems to come with a lower risk of cholangiocarcinoma: http://www.ncbi.nlm.nih.gov/pubmed/12029635 http://www.ncbi.nlm.nih.gov/pubmed/12377815 http://www.ncbi.nlm.nih.gov/pubmed/18395078 Because only about 5% of PSC patients have small-duct PSC, only a small fraction of the group may be able to answer your questions about their experiences with this form of the disease. Best regards, Dave (father of (22); PSC 07/03; UC 08/03) > > Can some of you with small duct PSC give me some insight into the > disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Dear ; Small-duct PSC appears to run a more benign course than classic PSC. While it can evolve into large-duct PSC it seems to come with a lower risk of cholangiocarcinoma: http://www.ncbi.nlm.nih.gov/pubmed/12029635 http://www.ncbi.nlm.nih.gov/pubmed/12377815 http://www.ncbi.nlm.nih.gov/pubmed/18395078 Because only about 5% of PSC patients have small-duct PSC, only a small fraction of the group may be able to answer your questions about their experiences with this form of the disease. Best regards, Dave (father of (22); PSC 07/03; UC 08/03) > > Can some of you with small duct PSC give me some insight into the > disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Dear ; Small-duct PSC appears to run a more benign course than classic PSC. While it can evolve into large-duct PSC it seems to come with a lower risk of cholangiocarcinoma: http://www.ncbi.nlm.nih.gov/pubmed/12029635 http://www.ncbi.nlm.nih.gov/pubmed/12377815 http://www.ncbi.nlm.nih.gov/pubmed/18395078 Because only about 5% of PSC patients have small-duct PSC, only a small fraction of the group may be able to answer your questions about their experiences with this form of the disease. Best regards, Dave (father of (22); PSC 07/03; UC 08/03) > > Can some of you with small duct PSC give me some insight into the > disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 ,I started with small duct PSC since I had a long history of UC; my liver looked cirrhotic during colectomy surgery; the liver biopsy was consistent with PSC and my LFTs were all really elevated. I had some itching also back in 2000. The ERCP was normal. I didn't get a clear diagnosis until 2006, and even then it wasn't that clear, until another liver biopsy that revealed PSC or PBC and AIH (autoimmune hepatitis). Due to the full history, it's far more likely to be PSC rather than PBC, and my hepatologist says PSC.My LFTs go up and down, but are usually normal. But when they change, they change quickly and rather extremely. But anyway, the bilirubin can be elevated with small duct PSC. Quite frankly, less is known about small duct PSC and I think the doctors just don't know. I suspect that most of the time small duct PSC becomes large duct PSC. I think that the illness normally begins with the large common bile duct and works it's way out to the small ducts. But with small duct PSC, the disease instead starts with the small ducts on the outer edges of the liver and works it's way inward toward the common bile duct. Hence the early appearance of cirrhosis of the liver, since the small ducts at the outer edges of the liver are sclerosing. But this image may also be wrong, since some people will have PSC on one side of the liver and not the other side of the liver. But with me, I know my liver has appeared cirrhotic since 2000, yet it keeps on working pretty well (as far as the blood tests go).By the way, my doctor thinks I should have fatigue since my LFTs are normal. But it's not so uncommon to have symptoms even with normal LFTs. In fact it seems to be pretty common from the people I talked to at the PSC conference, and from what I've heard from this site.Marie UC, J-pouch, PSC, AIH, adrenal gland insufficiencyTo: From: megasam2@...Date: Tue, 6 May 2008 00:29:48 +0000Subject: Small duct PSC Can some of you with small duct PSC give me some insight into the disease. My husband and I had a consultation with his doctor today and were told that it looked like he has small duct psc with no large duct involvement at this time. I am wondering what some of your experiences are with this. Do you have symptoms? He has elevated bilirubin and the doctor says that shouldn't happen with small duct psc until it is more advanced. I would really appreciate any advice or insight as I am just trying to get everything straight. Thanks, wife to Rick- crohns, spondylorarthropathy, psc With Windows Live for mobile, your contacts travel with you. Connect on the go. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Thanks Marie. My husband's LFTs were very elevated when he was first diagnosed but the bilirubin had always been normal. Now his bilirubin is elevated but the doctor thinks it may be due to the 6MP he takes. His eyes turned a soft shade of yellow a few weeks ago and have not returned to normal. The doctor said that when he was first diagnosed with PSC it was only in the very outer ducts and now it has come down to the ducts that lead to the CBD. That only took two years. I don't know if that is fast or not. I don't know if that means that it will eventually go to the CBD. The doctor wants blood work run once a month but doesn't want to see him for six months. Since I don't personaly know anyone else with his disease it is hard to know what is going to happen, although I suppose there is no way to know what this disease will bring. And I don't know if his doctor is being aggressive enough. There was some discrepancy between the ultrasound and the ercp results and the doctor seems to think that the ultrasound results should just be ignored. Sometimes I just don't know what to think. > > > , > > I started with small duct PSC since I had a long history of UC; my liver looked cirrhotic during colectomy surgery; the liver biopsy was consistent with PSC and my LFTs were all really elevated. I had some itching also back in 2000. The ERCP was normal. I didn't get a clear diagnosis until 2006, and even then it wasn't that clear, until another liver biopsy that revealed PSC or PBC and AIH (autoimmune hepatitis). Due to the full history, it's far more likely to be PSC rather than PBC, and my hepatologist says PSC. > > My LFTs go up and down, but are usually normal. But when they change, they change quickly and rather extremely. But anyway, the bilirubin can be elevated with small duct PSC. Quite frankly, less is known about small duct PSC and I think the doctors just don't know. I suspect that most of the time small duct PSC becomes large duct PSC. I think that the illness normally begins with the large common bile duct and works it's way out to the small ducts. But with small duct PSC, the disease instead starts with the small ducts on the outer edges of the liver and works it's way inward toward the common bile duct. Hence the early appearance of cirrhosis of the liver, since the small ducts at the outer edges of the liver are sclerosing. But this image may also be wrong, since some people will have PSC on one side of the liver and not the other side of the liver. But with me, I know my liver has appeared cirrhotic since 2000, yet it keeps on working pretty well (as far as the blood tests go). > > By the way, my doctor thinks I should have fatigue since my LFTs are normal. But it's not so uncommon to have symptoms even with normal LFTs. In fact it seems to be pretty common from the people I talked to at the PSC conference, and from what I've heard from this site. > > Marie > > > > UC, J-pouch, PSC, AIH, adrenal gland insufficiency > > To: > From: megasam2@... > Date: Tue, 6 May 2008 00:29:48 +0000 > Subject: Small duct PSC > > > > > > > > > > > > > > > > > > > > > Can some of you with small duct PSC give me some insight into the > > disease. My husband and I had a consultation with his doctor today > > and were told that it looked like he has small duct psc with no large > > duct involvement at this time. I am wondering what some of your > > experiences are with this. Do you have symptoms? He has elevated > > bilirubin and the doctor says that shouldn't happen with small duct > > psc until it is more advanced. I would really appreciate any advice > > or insight as I am just trying to get everything straight. > > Thanks, > > > > wife to Rick- crohns, spondylorarthropathy, psc > > > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > With Windows Live for mobile, your contacts travel with you. > http://www.windowslive.com/mobile/overview.html? ocid=TXT_TAGLM_WL_Refresh_mobile_052008 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Thanks Marie. My husband's LFTs were very elevated when he was first diagnosed but the bilirubin had always been normal. Now his bilirubin is elevated but the doctor thinks it may be due to the 6MP he takes. His eyes turned a soft shade of yellow a few weeks ago and have not returned to normal. The doctor said that when he was first diagnosed with PSC it was only in the very outer ducts and now it has come down to the ducts that lead to the CBD. That only took two years. I don't know if that is fast or not. I don't know if that means that it will eventually go to the CBD. The doctor wants blood work run once a month but doesn't want to see him for six months. Since I don't personaly know anyone else with his disease it is hard to know what is going to happen, although I suppose there is no way to know what this disease will bring. And I don't know if his doctor is being aggressive enough. There was some discrepancy between the ultrasound and the ercp results and the doctor seems to think that the ultrasound results should just be ignored. Sometimes I just don't know what to think. > > > , > > I started with small duct PSC since I had a long history of UC; my liver looked cirrhotic during colectomy surgery; the liver biopsy was consistent with PSC and my LFTs were all really elevated. I had some itching also back in 2000. The ERCP was normal. I didn't get a clear diagnosis until 2006, and even then it wasn't that clear, until another liver biopsy that revealed PSC or PBC and AIH (autoimmune hepatitis). Due to the full history, it's far more likely to be PSC rather than PBC, and my hepatologist says PSC. > > My LFTs go up and down, but are usually normal. But when they change, they change quickly and rather extremely. But anyway, the bilirubin can be elevated with small duct PSC. Quite frankly, less is known about small duct PSC and I think the doctors just don't know. I suspect that most of the time small duct PSC becomes large duct PSC. I think that the illness normally begins with the large common bile duct and works it's way out to the small ducts. But with small duct PSC, the disease instead starts with the small ducts on the outer edges of the liver and works it's way inward toward the common bile duct. Hence the early appearance of cirrhosis of the liver, since the small ducts at the outer edges of the liver are sclerosing. But this image may also be wrong, since some people will have PSC on one side of the liver and not the other side of the liver. But with me, I know my liver has appeared cirrhotic since 2000, yet it keeps on working pretty well (as far as the blood tests go). > > By the way, my doctor thinks I should have fatigue since my LFTs are normal. But it's not so uncommon to have symptoms even with normal LFTs. In fact it seems to be pretty common from the people I talked to at the PSC conference, and from what I've heard from this site. > > Marie > > > > UC, J-pouch, PSC, AIH, adrenal gland insufficiency > > To: > From: megasam2@... > Date: Tue, 6 May 2008 00:29:48 +0000 > Subject: Small duct PSC > > > > > > > > > > > > > > > > > > > > > Can some of you with small duct PSC give me some insight into the > > disease. My husband and I had a consultation with his doctor today > > and were told that it looked like he has small duct psc with no large > > duct involvement at this time. I am wondering what some of your > > experiences are with this. Do you have symptoms? He has elevated > > bilirubin and the doctor says that shouldn't happen with small duct > > psc until it is more advanced. I would really appreciate any advice > > or insight as I am just trying to get everything straight. > > Thanks, > > > > wife to Rick- crohns, spondylorarthropathy, psc > > > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > With Windows Live for mobile, your contacts travel with you. > http://www.windowslive.com/mobile/overview.html? ocid=TXT_TAGLM_WL_Refresh_mobile_052008 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Thanks Marie. My husband's LFTs were very elevated when he was first diagnosed but the bilirubin had always been normal. Now his bilirubin is elevated but the doctor thinks it may be due to the 6MP he takes. His eyes turned a soft shade of yellow a few weeks ago and have not returned to normal. The doctor said that when he was first diagnosed with PSC it was only in the very outer ducts and now it has come down to the ducts that lead to the CBD. That only took two years. I don't know if that is fast or not. I don't know if that means that it will eventually go to the CBD. The doctor wants blood work run once a month but doesn't want to see him for six months. Since I don't personaly know anyone else with his disease it is hard to know what is going to happen, although I suppose there is no way to know what this disease will bring. And I don't know if his doctor is being aggressive enough. There was some discrepancy between the ultrasound and the ercp results and the doctor seems to think that the ultrasound results should just be ignored. Sometimes I just don't know what to think. > > > , > > I started with small duct PSC since I had a long history of UC; my liver looked cirrhotic during colectomy surgery; the liver biopsy was consistent with PSC and my LFTs were all really elevated. I had some itching also back in 2000. The ERCP was normal. I didn't get a clear diagnosis until 2006, and even then it wasn't that clear, until another liver biopsy that revealed PSC or PBC and AIH (autoimmune hepatitis). Due to the full history, it's far more likely to be PSC rather than PBC, and my hepatologist says PSC. > > My LFTs go up and down, but are usually normal. But when they change, they change quickly and rather extremely. But anyway, the bilirubin can be elevated with small duct PSC. Quite frankly, less is known about small duct PSC and I think the doctors just don't know. I suspect that most of the time small duct PSC becomes large duct PSC. I think that the illness normally begins with the large common bile duct and works it's way out to the small ducts. But with small duct PSC, the disease instead starts with the small ducts on the outer edges of the liver and works it's way inward toward the common bile duct. Hence the early appearance of cirrhosis of the liver, since the small ducts at the outer edges of the liver are sclerosing. But this image may also be wrong, since some people will have PSC on one side of the liver and not the other side of the liver. But with me, I know my liver has appeared cirrhotic since 2000, yet it keeps on working pretty well (as far as the blood tests go). > > By the way, my doctor thinks I should have fatigue since my LFTs are normal. But it's not so uncommon to have symptoms even with normal LFTs. In fact it seems to be pretty common from the people I talked to at the PSC conference, and from what I've heard from this site. > > Marie > > > > UC, J-pouch, PSC, AIH, adrenal gland insufficiency > > To: > From: megasam2@... > Date: Tue, 6 May 2008 00:29:48 +0000 > Subject: Small duct PSC > > > > > > > > > > > > > > > > > > > > > Can some of you with small duct PSC give me some insight into the > > disease. My husband and I had a consultation with his doctor today > > and were told that it looked like he has small duct psc with no large > > duct involvement at this time. I am wondering what some of your > > experiences are with this. Do you have symptoms? He has elevated > > bilirubin and the doctor says that shouldn't happen with small duct > > psc until it is more advanced. I would really appreciate any advice > > or insight as I am just trying to get everything straight. > > Thanks, > > > > wife to Rick- crohns, spondylorarthropathy, psc > > > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > With Windows Live for mobile, your contacts travel with you. > http://www.windowslive.com/mobile/overview.html? ocid=TXT_TAGLM_WL_Refresh_mobile_052008 > Quote Link to comment Share on other sites More sharing options...
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