Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 High dose is in this study 30-35mg/kg body weight. 25 mg/kg body weight is the recommended dose if I understand things correctly. Chaim Boermeester, Israel From: [mailto: ] On Behalf Of Marie Nilsson Sent: Wednesday, October 08, 2008 03:23 To: Subject: RE: Re: Urso HIGH dose URSO was found to be harmful and shortened the time to death or transplant. Marie To: From: cmp12305 (AT) aol (DOT) com Date: Tue, 7 Oct 2008 19:52:12 -0400 Subject: Re: Re: Urso Did the Mayo study find that high dose Urso was not effective, or all Urso? MizKit McCain or Obama? Stay updated on coverage of the Presidential race while you browse - Download Now! Want to do more with Windows Live? Learn “10 hidden secrets” from . Learn Now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 With all due respect I think this statement is an oversimplification of the results and conclusions have not yet been completed or published. A more accurate statement would be that within the study group some data indicated some participants in the Urso vs Placebo study group were experiencing some complications such as varices and need for transplant. This could be the result of several factors that have not yet been determined including in general many patients in this study were at an advanced stage of PSC prior to the start of the study. I was a participant and my doctor was a principal investigator in this study. I think most doctors believe it was quite unlikely that Urso caused any harm and these results are due more to statistical anomalies. With that being said I also believe most doctors believe that the Urso showed little long term benefit in PSC patients. This is a lot different though from stating that it caused harm. in Seattle > > > HIGH dose URSO was found to be harmful and shortened the time to death or transplant. > > Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 With all due respect I think this statement is an oversimplification of the results and conclusions have not yet been completed or published. A more accurate statement would be that within the study group some data indicated some participants in the Urso vs Placebo study group were experiencing some complications such as varices and need for transplant. This could be the result of several factors that have not yet been determined including in general many patients in this study were at an advanced stage of PSC prior to the start of the study. I was a participant and my doctor was a principal investigator in this study. I think most doctors believe it was quite unlikely that Urso caused any harm and these results are due more to statistical anomalies. With that being said I also believe most doctors believe that the Urso showed little long term benefit in PSC patients. This is a lot different though from stating that it caused harm. in Seattle > > > HIGH dose URSO was found to be harmful and shortened the time to death or transplant. > > Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 With all due respect I think this statement is an oversimplification of the results and conclusions have not yet been completed or published. A more accurate statement would be that within the study group some data indicated some participants in the Urso vs Placebo study group were experiencing some complications such as varices and need for transplant. This could be the result of several factors that have not yet been determined including in general many patients in this study were at an advanced stage of PSC prior to the start of the study. I was a participant and my doctor was a principal investigator in this study. I think most doctors believe it was quite unlikely that Urso caused any harm and these results are due more to statistical anomalies. With that being said I also believe most doctors believe that the Urso showed little long term benefit in PSC patients. This is a lot different though from stating that it caused harm. in Seattle > > > HIGH dose URSO was found to be harmful and shortened the time to death or transplant. > > Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 I truly apologize for my simplification, which was not an accurate picture of the situation. I would also add that a non-high dose of URSO is still accepted. I don't know that most people have been taken off their regular dose of URSO. I'm on 1200 mg/day.Marie To: From: kingpolo@...Date: Wed, 8 Oct 2008 20:22:28 +0000Subject: Re: Urso With all due respect I think this statement is an oversimplification of the results and conclusions have not yet been completed or published. A more accurate statement would be that within the study group some data indicated some participants in the Urso vs Placebo study group were experiencing some complications such as varices and need for transplant. This could be the result of several factors that have not yet been determined including in general many patients in this study were at an advanced stage of PSC prior to the start of the study. I was a participant and my doctor was a principal investigator in this study. I think most doctors believe it was quite unlikely that Urso caused any harm and these results are due more to statistical anomalies. With that being said I also believe most doctors believe that the Urso showed little long term benefit in PSC patients. This is a lot different though from stating that it caused harm. in Seattle > > > HIGH dose URSO was found to be harmful and shortened the time to death or transplant. > > Marie > > > > > > Want to do more with Windows Live? Learn “10 hidden secrets” from . Learn Now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 I truly apologize for my simplification, which was not an accurate picture of the situation. I would also add that a non-high dose of URSO is still accepted. I don't know that most people have been taken off their regular dose of URSO. I'm on 1200 mg/day.Marie To: From: kingpolo@...Date: Wed, 8 Oct 2008 20:22:28 +0000Subject: Re: Urso With all due respect I think this statement is an oversimplification of the results and conclusions have not yet been completed or published. A more accurate statement would be that within the study group some data indicated some participants in the Urso vs Placebo study group were experiencing some complications such as varices and need for transplant. This could be the result of several factors that have not yet been determined including in general many patients in this study were at an advanced stage of PSC prior to the start of the study. I was a participant and my doctor was a principal investigator in this study. I think most doctors believe it was quite unlikely that Urso caused any harm and these results are due more to statistical anomalies. With that being said I also believe most doctors believe that the Urso showed little long term benefit in PSC patients. This is a lot different though from stating that it caused harm. in Seattle > > > HIGH dose URSO was found to be harmful and shortened the time to death or transplant. > > Marie > > > > > > Want to do more with Windows Live? Learn “10 hidden secrets” from . Learn Now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 I truly apologize for my simplification, which was not an accurate picture of the situation. I would also add that a non-high dose of URSO is still accepted. I don't know that most people have been taken off their regular dose of URSO. I'm on 1200 mg/day.Marie To: From: kingpolo@...Date: Wed, 8 Oct 2008 20:22:28 +0000Subject: Re: Urso With all due respect I think this statement is an oversimplification of the results and conclusions have not yet been completed or published. A more accurate statement would be that within the study group some data indicated some participants in the Urso vs Placebo study group were experiencing some complications such as varices and need for transplant. This could be the result of several factors that have not yet been determined including in general many patients in this study were at an advanced stage of PSC prior to the start of the study. I was a participant and my doctor was a principal investigator in this study. I think most doctors believe it was quite unlikely that Urso caused any harm and these results are due more to statistical anomalies. With that being said I also believe most doctors believe that the Urso showed little long term benefit in PSC patients. This is a lot different though from stating that it caused harm. in Seattle > > > HIGH dose URSO was found to be harmful and shortened the time to death or transplant. > > Marie > > > > > > Want to do more with Windows Live? Learn “10 hidden secrets” from . Learn Now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 I'm on low dose URSO 750mg/day (`9mg/kg/day) and am finding it very effective. It is keeping my LFT numbers and has for the last nine years. My numbers were rising rapidly before I started taking it and they spiked when I tried stopping URSO in 2001. Ian (52) PSC 89 I truly apologize for my simplification, which was not an accurate picture of the situation. I would also add that a non-high dose of URSO is still accepted. I don't know that most people have been taken off their regular dose of URSO. I'm on 1200 mg/day. Marie To: From: kingpolo@... Date: Wed, 8 Oct 2008 20:22:28 +0000Subject: Re: Urso With all due respect I think this statement is an oversimplification of the results and conclusions have not yet been completed or published.A more accurate statement would be that within the study group some data indicated some participants in the Urso vs Placebo study group were experiencing some complications such as varices and need for transplant.This could be the result of several factors that have not yet been determined including in general many patients in this study were at an advanced stage of PSC prior to the start of the study. I was a participant and my doctor was a principal investigator in this study. I think most doctors believe it was quite unlikely that Urso caused any harm and these results are due more to statistical anomalies.With that being said I also believe most doctors believe that the Urso showed little long term benefit in PSC patients. This is a lot different though from stating that it caused harm. in Seattle>> > HIGH dose URSO was found to be harmful and shortened the time to death or transplant. > > Marie> > > > > > Want to do more with Windows Live? Learn "10 hidden secrets" from . Learn Now -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 I'm on low dose URSO 750mg/day (`9mg/kg/day) and am finding it very effective. It is keeping my LFT numbers and has for the last nine years. My numbers were rising rapidly before I started taking it and they spiked when I tried stopping URSO in 2001. Ian (52) PSC 89 I truly apologize for my simplification, which was not an accurate picture of the situation. I would also add that a non-high dose of URSO is still accepted. I don't know that most people have been taken off their regular dose of URSO. I'm on 1200 mg/day. Marie To: From: kingpolo@... Date: Wed, 8 Oct 2008 20:22:28 +0000Subject: Re: Urso With all due respect I think this statement is an oversimplification of the results and conclusions have not yet been completed or published.A more accurate statement would be that within the study group some data indicated some participants in the Urso vs Placebo study group were experiencing some complications such as varices and need for transplant.This could be the result of several factors that have not yet been determined including in general many patients in this study were at an advanced stage of PSC prior to the start of the study. I was a participant and my doctor was a principal investigator in this study. I think most doctors believe it was quite unlikely that Urso caused any harm and these results are due more to statistical anomalies.With that being said I also believe most doctors believe that the Urso showed little long term benefit in PSC patients. This is a lot different though from stating that it caused harm. in Seattle>> > HIGH dose URSO was found to be harmful and shortened the time to death or transplant. > > Marie> > > > > > Want to do more with Windows Live? Learn "10 hidden secrets" from . Learn Now -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 I have read about the study. I heard the opinions. We couldn't renew my prescription for Urso at Target or Walgreens since they changed manufacturer's. I told my transplant doc (Medical Director at the U and Co-Chair of Unos) about it. This was my last appointment September 22. He wrote me a script for Urso Forte which is actually easier since I only take two tablets in the morning and one at night. No noon pills. And I talked him out of ERCP #6 (my labs were normal). So it was a win- win. Make of it what you want. I am taking needless expensive medicine ($367.00 billed to insurance each bottle) or since I feel great, it works. Have a great day! in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 I was told 4-5 years ago to take my son off URSO by an integrative medicine doctor and then the head of the PSC Research team....he said it was worthless. He is doing better than the other children with PSC. Marna/ Wesley PSC/UC since 1996 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 Hi Marna; I disagree. It is not worthless. There is evidence that it protects against colon cancer, and may also protect against development of cholangiocarcinoma. It also improves liver biochemistry. All new therapies for PSC will have to be able to do the same. Best regards, Dave (father of (23); PSC 07/03; UC 08/03) > > I was told 4-5 years ago to take my son off URSO by an integrative > medicine doctor and then the head of the PSC Research team....he said > it was worthless. He is doing better than the other children with PSC. > > Marna/ Wesley PSC/UC since 1996 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 I must say that I also disagree. I was taken off of Urso in June of this year. AT the time my ALP was just slightly elevated and all other LFT's were normal; within 1 month all LFT's had doubled and within 3 months my ALP was almost 400. At that time they put me back on Urso and I have not had any labs yet so I do not know what my numbers curently are, but I do know that I feel better. My Doctor who also participated in the Urso study says that in all actuality it ppeared that the effectiveness of Urso depends on the person; therefore, they cannot truly say that it is effective nor can they truly say that it is not. He also indicated that another study may be starting i the near future. It will be interesting to see what my numbers with my next lab work. If you stop taking it and feel worse maybe you could talk to the Dr. about a trial at resuming it. It may have all been in my head, but I really believe it makes a difference for me. Dawn > > Hi Marna; > > I disagree. It is not worthless. There is evidence that it protects > against colon cancer, and may also protect against development of > cholangiocarcinoma. It also improves liver biochemistry. All new > therapies for PSC will have to be able to do the same. > > Best regards, > > Dave > (father of (23); PSC 07/03; UC 08/03) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 I guess Dr. Whitington was just in a bad mood because of seeing so many kids die. He was very cranky about PSC. I asked him about Urso...he said "worthless",,,I asked him about Infliximab and he said only as a last resort. I will say that he did not believe me about Primal Defense Ultra probiotics curing my son's 8 years of severe GERD. AND WE KNOW HE IS WRONG ! It happened in two weeks after a PHD told us that is is not the acid that is the problem it is the peristalsis. This is after being on 2 adult strength Nexium a day for 2 years. Prilosec would not phase it ! I have just read studies about it causing infarcts to the bile ducts.,,,,and about 3 in 5 gastro/liver doctors say that it brings the numbers to normal but the liver continues to deteriorate. I am torn because all the things that have helped my son came from me and what I researched and the things that hurt him ( Flagyl ) came from the doctors. They never told me about IV glutathione and it has been a miracle for Wesley whom has never known energy in his entire life.....he says....mom I feel like a regular kid now....and I never want to feel tired again. Then I see a medical conference saying that the cells dont glutathionate and therefore are immunoreactive. Also glutathione is the energy for the cell. So,,,,science is backing up how my son feels and his lab values went to normal without URSO for the first time in 12 years. Why hasn't a hepatologist or gastro doc told me this ????? They get 250 an hour! They ought to know ! Marna PS ,,,,I mean this with no hard feelings. This is such a tricky disease process with no solid answers and conflicting research all over the place that we all have to stay up on it and go with our instinct and best judgement on how to care for our child. Certainly not easy. marna/wesley 12 years PSC/UC now 13. Subject: Re: URSOTo: Date: Sunday, October 12, 2008, 9:34 AM Hi Marna;I disagree. It is not worthless. There is evidence that it protects against colon cancer, and may also protect against development of cholangiocarcinoma. It also improves liver biochemistry. All new therapies for PSC will have to be able to do the same. Best regards,Dave (father of (23); PSC 07/03; UC 08/03)>> I was told 4-5 years ago to take my son off URSO by an integrative > medicine doctor and then the head of the PSC Research team....he said > it was worthless. He is doing better than the other children with PSC. > > Marna/ Wesley PSC/UC since 1996> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 Hi MARNA MORAN, I am glad to hear your son feels better, I've suffered from GERD, since I started taking Ursolit. I went through Gastroscopy and I take 2 Omepradex (Locek) 20 mg X2 a day and nothing helps me, it gets even worse and worse with the time. Can you please tell some more about how you solved this problem with yor kid. And the same about IV glutathione. Thanks a lot. > > > > I was told 4-5 years ago to take my son off URSO by an integrative > > medicine doctor and then the head of the PSC Research team....he said > > it was worthless. He is doing better than the other children with > PSC. > > > > Marna/ Wesley PSC/UC since 1996 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 Hi Marna; I think that your son's response to IV glutathione is fascinating! I think we are on the same page, and we both want to see novel therapies tried and tested as soon as possible. I have long thought that down regulation of the retinoid X receptor is a key factor in PSC. This is one of the receptors that is activated by docosahexaenoic acid (DHA). The retinoid X receptor controls many steps in bile acid metabolism and transport, including glutathione homeostasis: Wu Y, Zhang X, Bardag-Gorce F, Robel RC, Aguilo J, Chen L, Zeng Y, Hwang K, French SW, Lu SC, Wan YJ 2004 Retinoid X receptor alpha regulates glutathione homeostasis and xenobiotic detoxification processes in mouse liver. Mol. Pharmacol. Mar;65(3):550-7. Department of Pathology, Harbor-University of California Los Angeles Research and Education Institute, Torrance, USA. Retinoid X receptor alpha (RXRalpha) plays a pivotal role in regulating liver metabolism. RXRalpha-mediated gene expression involved in amino acid metabolism was examined using the NIA Mouse 15K cDNA microarray containing 15,000 different expressed sequence tags. Seven amino acid metabolic genes, three of which encode enzymes involved in phase II detoxification process, were identified as RXRalpha target genes in mouse liver. Glutamate-cysteine ligase catalytic subunit (GCLC), glutathione S-transferasemu, and glutathione peroxidase 1 were down-regulated in the liver of hepatocyte RXRalpha-deficient mice. The down-regulation of GCLC in RXRalpha-deficient mice led to 40% and 45% reductions in the rate of glutathione (GSH) synthesis and level of hepatic GSH, respectively. Primary hepatocytes from RXRalpha-deficient mice were more sensitive to t-butylhydroperoxide-induced oxidative stress. However, GSH diminished RXRalpha-deficient mice were resistant to acetaminophen (APAP)-induced hepatotoxicity. Analysis of phase I detoxification genes revealed that CYP1A2 and CYP3A11 were up-regulated in wild-type mice but down-regulated in RXRalpha-deficient mice after APAP administration. Taken together, the data indicate that RXRalpha centrally regulates both phase I and phase II drug metabolism and detoxification. Regulation of hepatic GSH levels by RXRalpha is essential to protect hepatocytes from oxidative stress, whereas up- regulation of phase I drug metabolism genes by RXRalpha may render the liver more sensitive to APAP-induced toxicity. PMID: 14978233. Best regards, Dave (father of (23); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2008 Report Share Posted October 12, 2008 _,_._,___ " the effectiveness of Urso depends on the person " I have certainly found USRO is very effective for me. I started taking it in 1999 when my Alk Phos number had risen above 400 hundred and it looked like I was headed for a transplant. In the nine years since I've been taking it most of my alk phos readings have been around 150. In 2001 I tried going off UROS and my Reading rose to over 250 in one month. I've taken it every day since, with some playing around with the dosage (between 375gm - 1000mg /day) My last reading was at the lowest level in 19 years 76 (PTL). -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 May I ask if this was PEter Whittington or his brother? We see Dr. Whittington out of Childrens in Chicago and he put our son Tyler on Urso and recommended that Remicade not only helps UC but seems to help PSC too. He is the head of research in Chicago and I know his brother is too in another city. At Your Service, Stevie Ostos sgedgaud@... " moranclan07 " " moranclan07 " Sent by: 10/12/2008 05:05 AM Please respond to To cc Subject URSO I was told 4-5 years ago to take my son off URSO by an integrative medicine doctor and then the head of the PSC Research team....he said it was worthless. He is doing better than the other children with PSC. Marna/ Wesley PSC/UC since 1996 Quote Link to comment Share on other sites More sharing options...
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