Guest guest Posted July 25, 2006 Report Posted July 25, 2006 Great questions Nina.I don't have the answers but I can relate my son's experience.He takes 2,000mg of urso daily which puts him in the 25-30mg/kg high dose.He takes one fish oil capsule a day because that is all I can get him to take. Three is a daily dose.He takes one Flora-Q, imodium and 1,000mg of cipro because of the pouchitis after having his colon removed.His ALK was 500 to 800 before Urso and now runs 224-246 since the high dose.His ALT and AST have come down to 72 and 61 but are still slightly elevated.We noticed a drop in his ALK right away after starting the Urso even though it wasn't the high dose.Steroids never helped Bill's numbers. He was on prednisone for over a year. Even when he was on a daily dose of 40mg, it didn't help his UC or his liver numbers.From Bill's experience I would avoid the steroids if at all possible but of course follow your Dr's advice in this.We have not added a fibrate.I hope others chime in.Lee. Questions: 1) is there anything he should be doing/taking to target the Alk Phos specifically? 2) how long until we should expect to see a change in the Alk Phos from the Urso? I did a search of previous posts and it seems standard that any Alk Phos reduction would lag behind the other effects. However, my husband never had an ERCP to confirm diagnosis - his doctor did not want to risk the potential pancreatitis - so I still have a lingering concern that he actually has PSC/AIH overlap or autoimmune cholangitis. Because of this concern my thought is that, if we can't get his Alk Phos under control with the Urso/fish oil we should at least try a stretch of steroids. What do you all think of that? If you agree, how long do you think we should give the Urso/fish oil to work first? And has anyone had success adding a fibrate? Thanks,Ninahusband. Quote
Guest guest Posted July 25, 2006 Report Posted July 25, 2006 Great questions Nina.I don't have the answers but I can relate my son's experience.He takes 2,000mg of urso daily which puts him in the 25-30mg/kg high dose.He takes one fish oil capsule a day because that is all I can get him to take. Three is a daily dose.He takes one Flora-Q, imodium and 1,000mg of cipro because of the pouchitis after having his colon removed.His ALK was 500 to 800 before Urso and now runs 224-246 since the high dose.His ALT and AST have come down to 72 and 61 but are still slightly elevated.We noticed a drop in his ALK right away after starting the Urso even though it wasn't the high dose.Steroids never helped Bill's numbers. He was on prednisone for over a year. Even when he was on a daily dose of 40mg, it didn't help his UC or his liver numbers.From Bill's experience I would avoid the steroids if at all possible but of course follow your Dr's advice in this.We have not added a fibrate.I hope others chime in.Lee. Questions: 1) is there anything he should be doing/taking to target the Alk Phos specifically? 2) how long until we should expect to see a change in the Alk Phos from the Urso? I did a search of previous posts and it seems standard that any Alk Phos reduction would lag behind the other effects. However, my husband never had an ERCP to confirm diagnosis - his doctor did not want to risk the potential pancreatitis - so I still have a lingering concern that he actually has PSC/AIH overlap or autoimmune cholangitis. Because of this concern my thought is that, if we can't get his Alk Phos under control with the Urso/fish oil we should at least try a stretch of steroids. What do you all think of that? If you agree, how long do you think we should give the Urso/fish oil to work first? And has anyone had success adding a fibrate? Thanks,Ninahusband. Quote
Guest guest Posted July 25, 2006 Report Posted July 25, 2006 Thanks for answering, Lee. I was doing some research on the wonderful literature base and came across this article on bezafibrate. It really made me think that, especially for someone in my husband's situation, it could really help. What are you thoughts? Has anyone out there pushed to be put onto bezafibrate? If so, has it had any effects? Thanks, Nina husband PSC 4/06 - AST and ALT normal after 3 months of high dose Urso and fish oil, Alk Phos still elevated. The effect of bezafibrate treatment on serum alkaline phosphatase isoenzyme activities. Day AP, Feher MD, Chopra R, Mayne PD. Department of Chemical Pathology, Charing Cross and Westminister Medical School, London, UK. A reduction in serum total alkaline phosphatase (ALP) activity is a well-documented side effect of treatment with bezafibrate and other fibric acid derivatives. To evaluate the effect of bezafibrate treatment on individual ALP isoenzyme activities, 10 patients were studied on two separate occasions, first, after a 6-week period on no drug treatment, and second, after 6 weeks of bezafibrate therapy. On each occasion, serum total ALP and ALP isoenzyme activities and serum gamma-glutamyltransferase (GGT) activity were measured both after fasting and following the ingestion of a standardized high-fat meal rich in long-chain fatty acid triglycerides, as intestinal ALP activity is known to be influenced by dietary fat intake. Plasma aspartate aminotransferase (AST) and alanine aminotransferase (ALT) activities were measured on fasting samples. In the fasting state, bezafibrate treatment resulted in a 25% reduction (P < .01) in serum total ALP activity; liver ALP activity was reduced by 40% (P < .01), and biliary ALP activity was reduced in those patients in whom it was initially detectable, while bone and intestinal ALP activities were unchanged. There was also a 15% reduction (P < .05) in serum GGT activity, but no change in plasma AST or ALT activities. Serum intestinal ALP activity increased significantly (P < .01) by 1 hour following ingestion of the high-fat meal, but treatment with bezafibrate did not change the magnitude of this response. There was no change in the activity of any other ALP isoenzyme following fat ingestion. This study demonstrates that the effect of bezafibrate on serum ALP activity is confined to the liver and biliary isoenzymes. (ABSTRACT TRUNCATED AT 250 WORDS) Quote
Guest guest Posted July 25, 2006 Report Posted July 25, 2006 Thanks for answering, Lee. I was doing some research on the wonderful literature base and came across this article on bezafibrate. It really made me think that, especially for someone in my husband's situation, it could really help. What are you thoughts? Has anyone out there pushed to be put onto bezafibrate? If so, has it had any effects? Thanks, Nina husband PSC 4/06 - AST and ALT normal after 3 months of high dose Urso and fish oil, Alk Phos still elevated. The effect of bezafibrate treatment on serum alkaline phosphatase isoenzyme activities. Day AP, Feher MD, Chopra R, Mayne PD. Department of Chemical Pathology, Charing Cross and Westminister Medical School, London, UK. A reduction in serum total alkaline phosphatase (ALP) activity is a well-documented side effect of treatment with bezafibrate and other fibric acid derivatives. To evaluate the effect of bezafibrate treatment on individual ALP isoenzyme activities, 10 patients were studied on two separate occasions, first, after a 6-week period on no drug treatment, and second, after 6 weeks of bezafibrate therapy. On each occasion, serum total ALP and ALP isoenzyme activities and serum gamma-glutamyltransferase (GGT) activity were measured both after fasting and following the ingestion of a standardized high-fat meal rich in long-chain fatty acid triglycerides, as intestinal ALP activity is known to be influenced by dietary fat intake. Plasma aspartate aminotransferase (AST) and alanine aminotransferase (ALT) activities were measured on fasting samples. In the fasting state, bezafibrate treatment resulted in a 25% reduction (P < .01) in serum total ALP activity; liver ALP activity was reduced by 40% (P < .01), and biliary ALP activity was reduced in those patients in whom it was initially detectable, while bone and intestinal ALP activities were unchanged. There was also a 15% reduction (P < .05) in serum GGT activity, but no change in plasma AST or ALT activities. Serum intestinal ALP activity increased significantly (P < .01) by 1 hour following ingestion of the high-fat meal, but treatment with bezafibrate did not change the magnitude of this response. There was no change in the activity of any other ALP isoenzyme following fat ingestion. This study demonstrates that the effect of bezafibrate on serum ALP activity is confined to the liver and biliary isoenzymes. (ABSTRACT TRUNCATED AT 250 WORDS) Quote
Guest guest Posted July 25, 2006 Report Posted July 25, 2006 Hi, I spent a while on Fenofibrate, which I believe is similar in effect to bezafibrate. I must admit that I expected it to adversely affect the liver function tests, but I was pleasantly suprised to see that it didn't. The URSO made the biggest impact on my GGT, which is now 1/8 of what it previously was. However, I have been keeping a graph in Excel of all my reslts over the past couple of years. When I get home tonight I'll check the graph for Alk Phos levels and get back if there was any significant change due to the fibrate. . > > Thanks for answering, Lee. I was doing some research on the > wonderful literature base and came across this article on > bezafibrate. It really made me think that, especially for someone > in my husband's situation, it could really help. What are you > thoughts? Has anyone out there pushed to be put onto bezafibrate? > If so, has it had any effects? Thanks, > Quote
Guest guest Posted July 25, 2006 Report Posted July 25, 2006 Hi, I spent a while on Fenofibrate, which I believe is similar in effect to bezafibrate. I must admit that I expected it to adversely affect the liver function tests, but I was pleasantly suprised to see that it didn't. The URSO made the biggest impact on my GGT, which is now 1/8 of what it previously was. However, I have been keeping a graph in Excel of all my reslts over the past couple of years. When I get home tonight I'll check the graph for Alk Phos levels and get back if there was any significant change due to the fibrate. . > > Thanks for answering, Lee. I was doing some research on the > wonderful literature base and came across this article on > bezafibrate. It really made me think that, especially for someone > in my husband's situation, it could really help. What are you > thoughts? Has anyone out there pushed to be put onto bezafibrate? > If so, has it had any effects? Thanks, > Quote
Guest guest Posted July 25, 2006 Report Posted July 25, 2006 Hi, I spent a while on Fenofibrate, which I believe is similar in effect to bezafibrate. I must admit that I expected it to adversely affect the liver function tests, but I was pleasantly suprised to see that it didn't. The URSO made the biggest impact on my GGT, which is now 1/8 of what it previously was. However, I have been keeping a graph in Excel of all my reslts over the past couple of years. When I get home tonight I'll check the graph for Alk Phos levels and get back if there was any significant change due to the fibrate. . > > Thanks for answering, Lee. I was doing some research on the > wonderful literature base and came across this article on > bezafibrate. It really made me think that, especially for someone > in my husband's situation, it could really help. What are you > thoughts? Has anyone out there pushed to be put onto bezafibrate? > If so, has it had any effects? Thanks, > Quote
Guest guest Posted July 25, 2006 Report Posted July 25, 2006 I'm assuming 's docs must have him on high dose Urso, also, as he's about 23 kg and is on 750mg/day. I believe that comes out to about 32 mg/kg/day. If I'm figuring right. And 0.43 mg/kg/day of the Prednisone. Ami Lee Bria wrote: Great questions Nina. I don't have the answers but I can relate my son's experience. He takes 2,000mg of urso daily which puts him in the 25-30mg/kg high dose. He takes one fish oil capsule a day because that is all I can get him to take. Three is a daily dose. He takes one Flora-Q, imodium and 1,000mg of cipro because of the pouchitis after having his colon removed. His ALK was 500 to 800 before Urso and now runs 224-246 since the high dose. His ALT and AST have come down to 72 and 61 but are still slightly elevated. We noticed a drop in his ALK right away after starting the Urso even though it wasn't the high dose. Steroids never helped Bill's numbers. He was on prednisone for over a year. Even when he was on a daily dose of 40mg, it didn't help his UC or his liver numbers. From Bill's experience I would avoid the steroids if at all possible but of course follow your Dr's advice in this. We have not added a fibrate. I hope others chime in. Lee . Questions: 1) is there anything he should be doing/taking to target the Alk Phos specifically? 2) how long until we should expect to see a change in the Alk Phos from the Urso? I did a search of previous posts and it seems standard that any Alk Phos reduction would lag behind the other effects. However, my husband never had an ERCP to confirm diagnosis - his doctor did not want to risk the potential pancreatitis - so I still have a lingering concern that he actually has PSC/AIH overlap or autoimmune cholangitis. Because of this concern my thought is that, if we can't get his Alk Phos under control with the Urso/fish oil we should at least try a stretch of steroids. What do you all think of that? If you agree, how long do you think we should give the Urso/fish oil to work first? And has anyone had success adding a fibrate? Thanks,Ninahusband . Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote
Guest guest Posted July 26, 2006 Report Posted July 26, 2006 OK, here's my figures. In the first 9 months of URSO at 14mg/Kg my ALP dropped to half it's pre-URSO value and my GGT to less than one third. In the 3 month period during which I was taking URSO+Fenofibrate (160mg) the ALP dropped about 60% and the GGT to about 40% of the pre-fibrate levels. The exact figures are: GGT pre-treatment 169 GGT at 9 months with URSO 55 GGT at 12 months with URSO+Fenofibrate 21 ALP pre-treatment 87 ALP at 9 months with URSO 76 ALP at 12 months with URSO+Fenofibrate 44 So you can see that both GGT and ALP took a sudden dive with the URSO+Fenofibrate combination. Currently I've stopped Fenofribate to take Vytorin, so I should be able to see if the GGT and ALP levels go up again when I have a blood test in a couple of weeks. I suppose the upshot of this is that URSO+Fenofribrate works for me in further dropping both the alkaline phosphatase and gamma-glutamyltranspeptidase levels as compared to URSO alone. This isn't to say that it would work for everyone, but it's always worth a try. . > > > > Thanks for answering, Lee. I was doing some research on the > > wonderful literature base and came across this article on > > bezafibrate. It really made me think that, especially for someone > > in my husband's situation, it could really help. What are you > > thoughts? Has anyone out there pushed to be put onto > bezafibrate? > > If so, has it had any effects? Thanks, > > > Quote
Guest guest Posted July 26, 2006 Report Posted July 26, 2006 OK, here's my figures. In the first 9 months of URSO at 14mg/Kg my ALP dropped to half it's pre-URSO value and my GGT to less than one third. In the 3 month period during which I was taking URSO+Fenofibrate (160mg) the ALP dropped about 60% and the GGT to about 40% of the pre-fibrate levels. The exact figures are: GGT pre-treatment 169 GGT at 9 months with URSO 55 GGT at 12 months with URSO+Fenofibrate 21 ALP pre-treatment 87 ALP at 9 months with URSO 76 ALP at 12 months with URSO+Fenofibrate 44 So you can see that both GGT and ALP took a sudden dive with the URSO+Fenofibrate combination. Currently I've stopped Fenofribate to take Vytorin, so I should be able to see if the GGT and ALP levels go up again when I have a blood test in a couple of weeks. I suppose the upshot of this is that URSO+Fenofribrate works for me in further dropping both the alkaline phosphatase and gamma-glutamyltranspeptidase levels as compared to URSO alone. This isn't to say that it would work for everyone, but it's always worth a try. . > > > > Thanks for answering, Lee. I was doing some research on the > > wonderful literature base and came across this article on > > bezafibrate. It really made me think that, especially for someone > > in my husband's situation, it could really help. What are you > > thoughts? Has anyone out there pushed to be put onto > bezafibrate? > > If so, has it had any effects? Thanks, > > > Quote
Guest guest Posted July 26, 2006 Report Posted July 26, 2006 sorry, kevin, one more question - 14 mg/kg does not qualify as high- dose urso, i don't think. is there a reason you are not taking the high-dose urso? My husband's dosage is 30 mg/kg, which we chose because it is the high end of the 25 - 30mg/kg high-dose recommendation (based on my understanding). tx, Nina husband PSC 4/06 ALT and AST back to normal with 3 months of high-dose urso, fish oil and vitamin supplements, Alk Phos still at pre-treatment levels Quote
Guest guest Posted July 26, 2006 Report Posted July 26, 2006 sorry, kevin, one more question - 14 mg/kg does not qualify as high- dose urso, i don't think. is there a reason you are not taking the high-dose urso? My husband's dosage is 30 mg/kg, which we chose because it is the high end of the 25 - 30mg/kg high-dose recommendation (based on my understanding). tx, Nina husband PSC 4/06 ALT and AST back to normal with 3 months of high-dose urso, fish oil and vitamin supplements, Alk Phos still at pre-treatment levels Quote
Guest guest Posted July 26, 2006 Report Posted July 26, 2006 sorry, kevin, one more question - 14 mg/kg does not qualify as high- dose urso, i don't think. is there a reason you are not taking the high-dose urso? My husband's dosage is 30 mg/kg, which we chose because it is the high end of the 25 - 30mg/kg high-dose recommendation (based on my understanding). tx, Nina husband PSC 4/06 ALT and AST back to normal with 3 months of high-dose urso, fish oil and vitamin supplements, Alk Phos still at pre-treatment levels Quote
Guest guest Posted July 26, 2006 Report Posted July 26, 2006 Hi, One limiting factor on the amount of URSO I take is that the current dosage level costs me $4000 a year. I would like to increase it a bit, if only to speed the dissolution of the gall stone. Which brings me to my pet rant: It's unfortunate that here in Australia it seems that you need a private prescription for this drug unless you are pregnant and itching. The fact that a person is jaundiced, has an obvious bile flow problem, a large gall stone, and their LFT's are many times the upper limit doesn't seem to be a justification to be prescribed a drug which would so obviously fix most, if not all, of the problems. End of rant :-) Anyway, from personal experience I would say give the fribates a go for a few months and see what changes in the ALP levels. Bear in mind that it was the Fenfribrate that I was on so results may be a little different. . > > sorry, kevin, one more question - 14 mg/kg does not qualify as high- > dose urso, i don't think. is there a reason you are not taking the > high-dose urso? My husband's dosage is 30 mg/kg, which we chose > because it is the high end of the 25 - 30mg/kg high-dose recommendation > (based on my understanding). tx, > Nina > > husband PSC 4/06 > ALT and AST back to normal with 3 months of high-dose urso, fish oil > and vitamin supplements, Alk Phos still at pre-treatment levels > Quote
Guest guest Posted July 26, 2006 Report Posted July 26, 2006 Hi, One limiting factor on the amount of URSO I take is that the current dosage level costs me $4000 a year. I would like to increase it a bit, if only to speed the dissolution of the gall stone. Which brings me to my pet rant: It's unfortunate that here in Australia it seems that you need a private prescription for this drug unless you are pregnant and itching. The fact that a person is jaundiced, has an obvious bile flow problem, a large gall stone, and their LFT's are many times the upper limit doesn't seem to be a justification to be prescribed a drug which would so obviously fix most, if not all, of the problems. End of rant :-) Anyway, from personal experience I would say give the fribates a go for a few months and see what changes in the ALP levels. Bear in mind that it was the Fenfribrate that I was on so results may be a little different. . > > sorry, kevin, one more question - 14 mg/kg does not qualify as high- > dose urso, i don't think. is there a reason you are not taking the > high-dose urso? My husband's dosage is 30 mg/kg, which we chose > because it is the high end of the 25 - 30mg/kg high-dose recommendation > (based on my understanding). tx, > Nina > > husband PSC 4/06 > ALT and AST back to normal with 3 months of high-dose urso, fish oil > and vitamin supplements, Alk Phos still at pre-treatment levels > Quote
Guest guest Posted July 26, 2006 Report Posted July 26, 2006 Hi, One limiting factor on the amount of URSO I take is that the current dosage level costs me $4000 a year. I would like to increase it a bit, if only to speed the dissolution of the gall stone. Which brings me to my pet rant: It's unfortunate that here in Australia it seems that you need a private prescription for this drug unless you are pregnant and itching. The fact that a person is jaundiced, has an obvious bile flow problem, a large gall stone, and their LFT's are many times the upper limit doesn't seem to be a justification to be prescribed a drug which would so obviously fix most, if not all, of the problems. End of rant :-) Anyway, from personal experience I would say give the fribates a go for a few months and see what changes in the ALP levels. Bear in mind that it was the Fenfribrate that I was on so results may be a little different. . > > sorry, kevin, one more question - 14 mg/kg does not qualify as high- > dose urso, i don't think. is there a reason you are not taking the > high-dose urso? My husband's dosage is 30 mg/kg, which we chose > because it is the high end of the 25 - 30mg/kg high-dose recommendation > (based on my understanding). tx, > Nina > > husband PSC 4/06 > ALT and AST back to normal with 3 months of high-dose urso, fish oil > and vitamin supplements, Alk Phos still at pre-treatment levels > Quote
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