Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Rita, I didn't answer before because I expected others with more scientific knowlege to chime in...Ursodiol can normalize labs in PSC patients. I'm not sure if the speed with which your son's labs dropped were common, but one of the things that Urso is known for doing is normalizing liver enzyme lab values. Also, since he's taking Asacol, I'm assuming he has colitis? If so, having that under control could reduce the inflammation in his body generally and make it easier for his liver to work. As for why his values were so high in the first place - I'm sure that all that beading in his ducts is why. If I understand things correctly, ALk Phos measures the damage being done to your bile ducts - that's why it is such a specific measure for helping to diagnose PSC. The AST and ALT are elevated when actual liver cells (not the ducts, but cells inside the liver) are dying. I can't remember about GGT - I haven't paid attention to that value in years because my docs told me it wasn't important for me to follow it. I'm curious what his bilirubin was when his Alk Phos was 1200? Was that elevated, too? I'm sorry that I can't lead you down the path of hoping that his condition was something other than PSC. It sounds very typical of PSC...I hope this helps a little. Maybe someone else can explain some more about how Urso works - I know can give an explanation, but even though he's very good at making it understandable, I still have trouble. I can tell you that when I had bile drains and started taking the Urso, I saw a visible change in the viscosity of my bile - it really did get thinner! Take care, Deb in VA PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Rita, I didn't answer before because I expected others with more scientific knowlege to chime in...Ursodiol can normalize labs in PSC patients. I'm not sure if the speed with which your son's labs dropped were common, but one of the things that Urso is known for doing is normalizing liver enzyme lab values. Also, since he's taking Asacol, I'm assuming he has colitis? If so, having that under control could reduce the inflammation in his body generally and make it easier for his liver to work. As for why his values were so high in the first place - I'm sure that all that beading in his ducts is why. If I understand things correctly, ALk Phos measures the damage being done to your bile ducts - that's why it is such a specific measure for helping to diagnose PSC. The AST and ALT are elevated when actual liver cells (not the ducts, but cells inside the liver) are dying. I can't remember about GGT - I haven't paid attention to that value in years because my docs told me it wasn't important for me to follow it. I'm curious what his bilirubin was when his Alk Phos was 1200? Was that elevated, too? I'm sorry that I can't lead you down the path of hoping that his condition was something other than PSC. It sounds very typical of PSC...I hope this helps a little. Maybe someone else can explain some more about how Urso works - I know can give an explanation, but even though he's very good at making it understandable, I still have trouble. I can tell you that when I had bile drains and started taking the Urso, I saw a visible change in the viscosity of my bile - it really did get thinner! Take care, Deb in VA PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Hi Rita; I think that the simplest explanation is that the levels of alkaline phosphatase (ALP) and gamma-glutamyltranspeptidase (GGT) reflect the extent of bile duct blockage at the time of the blood test .... the higher the levels of these enzymes the greater the blockage. So different patients might present with markedly different levels of ALP and GGT depending upon the extent of bile duct blockage. The main thing is that medications that your son is taking have normalized his LFTs, and this surely must be good in the long run. Our son had ALP of 551 and GGT of 471 at diagnosis, together with elevated AST and ALT. Our son saw a marked drop in ALT and AST within 1 month after taking ursodiol. ALT and AST reflect the level of hepatocyte damage/injury .... basically as hepatocytes die, they release ALT and AST into the blood stream. Our son's ALP has been much slower to decline ... it's now down to about 230 after 3 years on urso (clearly still elevated). Best regards. Dave (father of (21); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 When I was first diagnosed, I had pretty high lab values... apparently due to gallstones (secondary to the PSC). Once the gallstones cleared up, and especially after I had my gallbladder out, the labs went down quite a bit. I also started on Urso, so that may have had something to do with the drop also. Johanthan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Hi Rita, When my son was diagnosed his ALP was 1330 and GGT 650. After 4 months the ALP was down in the 300 to 400 range and GGT went down after 1 month of Urso (still high, but went down to the 200's). We saw a remarkable improvement on all his LFT's after taking the Urso. After transplant his LFT's were all in normal range for about 2 years. They have since gone up way out of normal range, but not quite as high as they were before. He has been on higher dose Urso, but the ALP and GGT still are rising continuously. What you are describing sounds like PSC, but I can certainly understand the hope you have of a possible misdiagnosis. Together in the fight, whatever it takes!!! Joanne (mom of Todd) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Hi Rita, When my son was diagnosed his ALP was 1330 and GGT 650. After 4 months the ALP was down in the 300 to 400 range and GGT went down after 1 month of Urso (still high, but went down to the 200's). We saw a remarkable improvement on all his LFT's after taking the Urso. After transplant his LFT's were all in normal range for about 2 years. They have since gone up way out of normal range, but not quite as high as they were before. He has been on higher dose Urso, but the ALP and GGT still are rising continuously. What you are describing sounds like PSC, but I can certainly understand the hope you have of a possible misdiagnosis. Together in the fight, whatever it takes!!! Joanne (mom of Todd) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2006 Report Share Posted September 30, 2006 Wow. I haven't posted in ages but I had to respond to you Rita. Our son was diagnosed at 17 and after meds he had the same incredible response that yours had. Everything is within normal range. My hope is that although everyone here has a diagnosis of psc that it's just a catch-all diagnosis for many different diseases. I still cling to the belief that our son's illness was actually caused by an overdose of the ADHD medication Strattera and that it will not progress. Maybe it's foolish to think this way, but he's had absolutely no problems or symptoms and I need to view him with a pristine and glorious future. This is why I have also disengaged a bit from the group. I don't want to view him as a kid with a disease but as a member of his college peer group. By the way, those of you within earshot of Southern Illinois public radio can here doing the news at WSIU. He's doing radio journalism, making films and he's actually going sailing and rock climbing. Clearly he's living life to the fullest and I've become a believer! Joan mom of , 19 college sophomore and loving it Re: Any explanations Hi Rita;I think that the simplest explanation is that the levels of alkaline phosphatase (ALP) and gamma-glutamyltranspeptidase (GGT) reflect the extent of bile duct blockage at the time of the blood test .... the higher the levels of these enzymes the greater the blockage. So different patients might present with markedly different levels of ALP and GGT depending upon the extent of bile duct blockage. The main thing is that medications that your son is taking have normalized his LFTs, and this surely must be good in the long run.Our son had ALP of 551 and GGT of 471 at diagnosis, together with elevated AST and ALT. Our son saw a marked drop in ALT and AST within 1 month after taking ursodiol. ALT and AST reflect the level of hepatocyte damage/injury .... basically as hepatocytes die, they release ALT and AST into the blood stream. Our son's ALP has been much slower to decline ... it's now down to about 230 after 3 years on urso (clearly still elevated). Best regards.Dave (father of (21); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2006 Report Share Posted September 30, 2006 Wow. I haven't posted in ages but I had to respond to you Rita. Our son was diagnosed at 17 and after meds he had the same incredible response that yours had. Everything is within normal range. My hope is that although everyone here has a diagnosis of psc that it's just a catch-all diagnosis for many different diseases. I still cling to the belief that our son's illness was actually caused by an overdose of the ADHD medication Strattera and that it will not progress. Maybe it's foolish to think this way, but he's had absolutely no problems or symptoms and I need to view him with a pristine and glorious future. This is why I have also disengaged a bit from the group. I don't want to view him as a kid with a disease but as a member of his college peer group. By the way, those of you within earshot of Southern Illinois public radio can here doing the news at WSIU. He's doing radio journalism, making films and he's actually going sailing and rock climbing. Clearly he's living life to the fullest and I've become a believer! Joan mom of , 19 college sophomore and loving it Re: Any explanations Hi Rita;I think that the simplest explanation is that the levels of alkaline phosphatase (ALP) and gamma-glutamyltranspeptidase (GGT) reflect the extent of bile duct blockage at the time of the blood test .... the higher the levels of these enzymes the greater the blockage. So different patients might present with markedly different levels of ALP and GGT depending upon the extent of bile duct blockage. The main thing is that medications that your son is taking have normalized his LFTs, and this surely must be good in the long run.Our son had ALP of 551 and GGT of 471 at diagnosis, together with elevated AST and ALT. Our son saw a marked drop in ALT and AST within 1 month after taking ursodiol. ALT and AST reflect the level of hepatocyte damage/injury .... basically as hepatocytes die, they release ALT and AST into the blood stream. Our son's ALP has been much slower to decline ... it's now down to about 230 after 3 years on urso (clearly still elevated). Best regards.Dave (father of (21); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Lee, I'm also assuming that your son is doing very well or he wouldn't be in New York. What's he doing? Also, hope your move is going well. Joan Re: Re: Any explanations Dear Joan, It is just wonderful to hear how great is doing ! Keep us posted. Lee By the way, those of you within earshot of Southern Illinois public radio can here doing the news at WSIU. He's doing radio journalism, making films and he's actually going sailing and rock climbing. Clearly he's living life to the fullest and I've become a believer! Joan mom of , 19 college sophomore and loving it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Lee, I'm also assuming that your son is doing very well or he wouldn't be in New York. What's he doing? Also, hope your move is going well. Joan Re: Re: Any explanations Dear Joan, It is just wonderful to hear how great is doing ! Keep us posted. Lee By the way, those of you within earshot of Southern Illinois public radio can here doing the news at WSIU. He's doing radio journalism, making films and he's actually going sailing and rock climbing. Clearly he's living life to the fullest and I've become a believer! Joan mom of , 19 college sophomore and loving it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 -Thanks Deb, I haven't checked my mail since Thursday so just now reading your response. Yes my son has Ulcerative Colitis also. Actually it is the constant diarrhea which lead to doing blood wrok and then finding his liver enzymes were also high. So diagnosis for both were at the same time. His total bili when his Alk Phos was sky high was about 1.8-2.0 and direct bili 0.8. When I asked his doctor about his bili levels which are 1.3 for total and 0.3 for direct now, he told me that he believes he also has Gilbert's and so bili levels will fluctuate a lot. We have quite a few " probables " . His doctor thinks he has an overlap with autoimmune hepatitis but another doctor who saw him the other day decause his doctor was not in said he is not sure of that diagnosis. I have to admit that this other doctor hadn't really looked at his entire file well. About GGT, my son's doctor also does not put much weight on that and so we have only had it done twice in approximately one and a half years. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 -Thanks Deb, I haven't checked my mail since Thursday so just now reading your response. Yes my son has Ulcerative Colitis also. Actually it is the constant diarrhea which lead to doing blood wrok and then finding his liver enzymes were also high. So diagnosis for both were at the same time. His total bili when his Alk Phos was sky high was about 1.8-2.0 and direct bili 0.8. When I asked his doctor about his bili levels which are 1.3 for total and 0.3 for direct now, he told me that he believes he also has Gilbert's and so bili levels will fluctuate a lot. We have quite a few " probables " . His doctor thinks he has an overlap with autoimmune hepatitis but another doctor who saw him the other day decause his doctor was not in said he is not sure of that diagnosis. I have to admit that this other doctor hadn't really looked at his entire file well. About GGT, my son's doctor also does not put much weight on that and so we have only had it done twice in approximately one and a half years. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 -Thanks Deb, I haven't checked my mail since Thursday so just now reading your response. Yes my son has Ulcerative Colitis also. Actually it is the constant diarrhea which lead to doing blood wrok and then finding his liver enzymes were also high. So diagnosis for both were at the same time. His total bili when his Alk Phos was sky high was about 1.8-2.0 and direct bili 0.8. When I asked his doctor about his bili levels which are 1.3 for total and 0.3 for direct now, he told me that he believes he also has Gilbert's and so bili levels will fluctuate a lot. We have quite a few " probables " . His doctor thinks he has an overlap with autoimmune hepatitis but another doctor who saw him the other day decause his doctor was not in said he is not sure of that diagnosis. I have to admit that this other doctor hadn't really looked at his entire file well. About GGT, my son's doctor also does not put much weight on that and so we have only had it done twice in approximately one and a half years. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 -, thanks for the response. So if my son's GGT and 1600 and Alk Phos was 1443 about a year and a half ago and they reduced quickly. Does it mean taht whatever caused the extremely high elevation is partially corrected? Does inflammation resulting in beading correct itself sometimes? His MRCP showed both intra and extra hepatic beading. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 -, thanks for the response. So if my son's GGT and 1600 and Alk Phos was 1443 about a year and a half ago and they reduced quickly. Does it mean taht whatever caused the extremely high elevation is partially corrected? Does inflammation resulting in beading correct itself sometimes? His MRCP showed both intra and extra hepatic beading. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 -, thanks for the response. So if my son's GGT and 1600 and Alk Phos was 1443 about a year and a half ago and they reduced quickly. Does it mean taht whatever caused the extremely high elevation is partially corrected? Does inflammation resulting in beading correct itself sometimes? His MRCP showed both intra and extra hepatic beading. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Joan, Our sons are in the same age group. My son turned 19 in June and is also a sophomore in college. My son is doing well also. We can only hope and pray and even if we are hoping for what may be impossible, it may help keep spirits high. I think and know I worry more than he or my husband does but I just wish so much for him as does everyone. I hope that his college years go smoothly. Rita (Florida) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Joan, Our sons are in the same age group. My son turned 19 in June and is also a sophomore in college. My son is doing well also. We can only hope and pray and even if we are hoping for what may be impossible, it may help keep spirits high. I think and know I worry more than he or my husband does but I just wish so much for him as does everyone. I hope that his college years go smoothly. Rita (Florida) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Joan, Our sons are in the same age group. My son turned 19 in June and is also a sophomore in college. My son is doing well also. We can only hope and pray and even if we are hoping for what may be impossible, it may help keep spirits high. I think and know I worry more than he or my husband does but I just wish so much for him as does everyone. I hope that his college years go smoothly. Rita (Florida) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2006 Report Share Posted October 4, 2006 Dear Rita; Sorry for not responding to your questions until now. I am not sure that I have a good answer for you, but I would assume that whatever the medications are doing they have likely allowed for some unblockage of his bile ducts. Perhaps the ursodiol has sufficiently thinned his bile to allow for better bile flow, allowing the ALP and GGT to go down (high GGT and ALP generally indicative of bile duct blockage). I would add that this must surely be better for his liver in the long- run than allowing the blockages to remain. Best regards, Dave (father of (21); PSC 07/03; UC 08/03) > So if my son's GGT and 1600 and Alk Phos was 1443 about a year and a half ago and they reduced quickly. Does it mean taht whatever caused the extremely high elevation is partially corrected? Does inflammation resulting in beading correct itself sometimes? His MRCP showed both intra and extra hepatic beading. Rita Quote Link to comment Share on other sites More sharing options...
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