Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 I was on Urso for over 17 years – 300 Mg twice a day. The only time I felt fatigued and had an upset stomach, other than occasionally, was when my Liver numbers were too high. In my case, it was specifically biliruben that caused the upset stomach. Have you had labs recently? Joe PSC & UC - 1990; Liver Transplant - 2007 From: [mailto: ] On Behalf Of sikeea_graham Sent: Tuesday, January 27, 2009 12:41 PM To: Subject: I'm on Urso, but... I have been on Urso (300 mg 2x a day) for close to 2 years. I hadn't really noticed many problems, but for the past month, I have been feeling really fatigued, nauseaus, and feeling like something died in my stomach. I don't know why, I've even been eating less processed foods. I guess what I need to know is: has anyone else had problems after being on Urso for a relatively short period of time? Is it PSC- related, or not? What can I expect? I feel like I'm back at square one with docs not really being sure what to do with me. It's even effecting my job performance, which doesn't help in this recession. Please help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 I was on Urso for over 17 years – 300 Mg twice a day. The only time I felt fatigued and had an upset stomach, other than occasionally, was when my Liver numbers were too high. In my case, it was specifically biliruben that caused the upset stomach. Have you had labs recently? Joe PSC & UC - 1990; Liver Transplant - 2007 From: [mailto: ] On Behalf Of sikeea_graham Sent: Tuesday, January 27, 2009 12:41 PM To: Subject: I'm on Urso, but... I have been on Urso (300 mg 2x a day) for close to 2 years. I hadn't really noticed many problems, but for the past month, I have been feeling really fatigued, nauseaus, and feeling like something died in my stomach. I don't know why, I've even been eating less processed foods. I guess what I need to know is: has anyone else had problems after being on Urso for a relatively short period of time? Is it PSC- related, or not? What can I expect? I feel like I'm back at square one with docs not really being sure what to do with me. It's even effecting my job performance, which doesn't help in this recession. Please help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 I was on Urso for over 17 years – 300 Mg twice a day. The only time I felt fatigued and had an upset stomach, other than occasionally, was when my Liver numbers were too high. In my case, it was specifically biliruben that caused the upset stomach. Have you had labs recently? Joe PSC & UC - 1990; Liver Transplant - 2007 From: [mailto: ] On Behalf Of sikeea_graham Sent: Tuesday, January 27, 2009 12:41 PM To: Subject: I'm on Urso, but... I have been on Urso (300 mg 2x a day) for close to 2 years. I hadn't really noticed many problems, but for the past month, I have been feeling really fatigued, nauseaus, and feeling like something died in my stomach. I don't know why, I've even been eating less processed foods. I guess what I need to know is: has anyone else had problems after being on Urso for a relatively short period of time? Is it PSC- related, or not? What can I expect? I feel like I'm back at square one with docs not really being sure what to do with me. It's even effecting my job performance, which doesn't help in this recession. Please help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Hi Sikeea, I’d say that you are having some build-up of liver enzymes and may be coming down with an infection. Get in to see your doctor and ask for liver function tests. This is a progressive disease, and after a few years, I’m not surprised if you are feeling worse. Nita for the past month, I have been feeling really fatigued, nauseaus, and feeling like something died in my stomach. I don't know why, I've even been eating less processed foods. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Hi Sikeea, I’d say that you are having some build-up of liver enzymes and may be coming down with an infection. Get in to see your doctor and ask for liver function tests. This is a progressive disease, and after a few years, I’m not surprised if you are feeling worse. Nita for the past month, I have been feeling really fatigued, nauseaus, and feeling like something died in my stomach. I don't know why, I've even been eating less processed foods. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 >Thanks, Nita. Wow, I have been bothering my doctors a lot, and even made an infectious disease specialist referred by my gastro order a liver panel test with the bloodwork she wanted to do for me. Still waiting for the results. Also, am taking Nexium because an ENT thinks I have acid reflux. I wonder if that is a result of the PSC and Urso, that maybe helping the bile flow better can also make it accumulate. > Hi Sikeea, > > > > I'd say that you are having some build-up of liver enzymes and may be coming > down with an infection. Get in to see your doctor and ask for liver function > tests. This is a progressive disease, and after a few years, I'm not > surprised if you are feeling worse. > > > > Nita > > > > for the past month, I have been feeling > really fatigued, nauseaus, and feeling like something died in my > stomach. I don't know why, I've even been eating less processed foods. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 >Thanks, Nita. Wow, I have been bothering my doctors a lot, and even made an infectious disease specialist referred by my gastro order a liver panel test with the bloodwork she wanted to do for me. Still waiting for the results. Also, am taking Nexium because an ENT thinks I have acid reflux. I wonder if that is a result of the PSC and Urso, that maybe helping the bile flow better can also make it accumulate. > Hi Sikeea, > > > > I'd say that you are having some build-up of liver enzymes and may be coming > down with an infection. Get in to see your doctor and ask for liver function > tests. This is a progressive disease, and after a few years, I'm not > surprised if you are feeling worse. > > > > Nita > > > > for the past month, I have been feeling > really fatigued, nauseaus, and feeling like something died in my > stomach. I don't know why, I've even been eating less processed foods. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 >Yes, I had labs last week and insisted on adding a liver panel to them. Waiting for the results. I've been passed around from an ENT who thinks I have a virus and acide reflux, says I should take Nexium for that, so I have, to my gastro to an infectious disease specialist. More appointments to come. Weirdly enough, my gastro thinks it's also a virus, since labs from mid-December didn't show unusual liver panels. Wonder what he will think of the latest results. Sounds narcissistic, but I thought that since I was faithfully taking my Urso and still youngish (not yet 30), that it would be a while before I had anymore problems. But, I feel that it is the PSC acting up, because it feels pretty much like before I was diagnosed, and is inconsistent, unlike a virus. > I was on Urso for over 17 years - 300 Mg twice a day. The only time I felt > fatigued and had an upset stomach, other than occasionally, was when my > Liver numbers were too high. In my case, it was specifically biliruben that > caused the upset stomach. Have you had labs recently? > > > > Joe > > PSC & UC - 1990; Liver Transplant - 2007 > > _____ > > From: [mailto:psc- support ] On > Behalf Of sikeea_graham > Sent: Tuesday, January 27, 2009 12:41 PM > To: > Subject: I'm on Urso, but... > > > > I have been on Urso (300 mg 2x a day) for close to 2 years. I hadn't really > noticed many problems, but for the past month, I have been feeling > really fatigued, nauseaus, and feeling like something died in my > stomach. I don't know why, I've even been eating less processed foods. > I guess what I need to know is: has anyone else had problems after > being on Urso for a relatively short period of time? Is it PSC- > related, or not? What can I expect? I feel like I'm back at square one > with docs not really being sure what to do with me. It's even > effecting my job performance, which doesn't help in this recession. > Please help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 >Yes, I had labs last week and insisted on adding a liver panel to them. Waiting for the results. I've been passed around from an ENT who thinks I have a virus and acide reflux, says I should take Nexium for that, so I have, to my gastro to an infectious disease specialist. More appointments to come. Weirdly enough, my gastro thinks it's also a virus, since labs from mid-December didn't show unusual liver panels. Wonder what he will think of the latest results. Sounds narcissistic, but I thought that since I was faithfully taking my Urso and still youngish (not yet 30), that it would be a while before I had anymore problems. But, I feel that it is the PSC acting up, because it feels pretty much like before I was diagnosed, and is inconsistent, unlike a virus. > I was on Urso for over 17 years - 300 Mg twice a day. The only time I felt > fatigued and had an upset stomach, other than occasionally, was when my > Liver numbers were too high. In my case, it was specifically biliruben that > caused the upset stomach. Have you had labs recently? > > > > Joe > > PSC & UC - 1990; Liver Transplant - 2007 > > _____ > > From: [mailto:psc- support ] On > Behalf Of sikeea_graham > Sent: Tuesday, January 27, 2009 12:41 PM > To: > Subject: I'm on Urso, but... > > > > I have been on Urso (300 mg 2x a day) for close to 2 years. I hadn't really > noticed many problems, but for the past month, I have been feeling > really fatigued, nauseaus, and feeling like something died in my > stomach. I don't know why, I've even been eating less processed foods. > I guess what I need to know is: has anyone else had problems after > being on Urso for a relatively short period of time? Is it PSC- > related, or not? What can I expect? I feel like I'm back at square one > with docs not really being sure what to do with me. It's even > effecting my job performance, which doesn't help in this recession. > Please help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 >Yes, I had labs last week and insisted on adding a liver panel to them. Waiting for the results. I've been passed around from an ENT who thinks I have a virus and acide reflux, says I should take Nexium for that, so I have, to my gastro to an infectious disease specialist. More appointments to come. Weirdly enough, my gastro thinks it's also a virus, since labs from mid-December didn't show unusual liver panels. Wonder what he will think of the latest results. Sounds narcissistic, but I thought that since I was faithfully taking my Urso and still youngish (not yet 30), that it would be a while before I had anymore problems. But, I feel that it is the PSC acting up, because it feels pretty much like before I was diagnosed, and is inconsistent, unlike a virus. > I was on Urso for over 17 years - 300 Mg twice a day. The only time I felt > fatigued and had an upset stomach, other than occasionally, was when my > Liver numbers were too high. In my case, it was specifically biliruben that > caused the upset stomach. Have you had labs recently? > > > > Joe > > PSC & UC - 1990; Liver Transplant - 2007 > > _____ > > From: [mailto:psc- support ] On > Behalf Of sikeea_graham > Sent: Tuesday, January 27, 2009 12:41 PM > To: > Subject: I'm on Urso, but... > > > > I have been on Urso (300 mg 2x a day) for close to 2 years. I hadn't really > noticed many problems, but for the past month, I have been feeling > really fatigued, nauseaus, and feeling like something died in my > stomach. I don't know why, I've even been eating less processed foods. > I guess what I need to know is: has anyone else had problems after > being on Urso for a relatively short period of time? Is it PSC- > related, or not? What can I expect? I feel like I'm back at square one > with docs not really being sure what to do with me. It's even > effecting my job performance, which doesn't help in this recession. > Please help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Do let us know! From: [mailto: ] On Behalf Of sikeea_graham Sent: Tuesday, January 27, 2009 7:17 PM To: Subject: Re: I'm on Urso, but... >Yes, I had labs last week and insisted on adding a liver panel to them. Waiting for the results. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Do let us know! From: [mailto: ] On Behalf Of sikeea_graham Sent: Tuesday, January 27, 2009 7:17 PM To: Subject: Re: I'm on Urso, but... >Yes, I had labs last week and insisted on adding a liver panel to them. Waiting for the results. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Do let us know! From: [mailto: ] On Behalf Of sikeea_graham Sent: Tuesday, January 27, 2009 7:17 PM To: Subject: Re: I'm on Urso, but... >Yes, I had labs last week and insisted on adding a liver panel to them. Waiting for the results. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 > >Yes, I had labs last week and insisted on adding a liver panel to > them. Waiting for the results. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 > >Yes, I had labs last week and insisted on adding a liver panel to > them. Waiting for the results. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 Hi! I'm so sorry to hear you're feeling worse. I have a lot of the symptoms that you're talking about. I'm not sure what form of Urso you're on, but when I was on Ursodiol, I was continually in pain, vomiting and nauseous. They switched me to Urso Forte and that definitely made a difference. As to whether what's happening to you is PSC related or not, I can't give you an answer. You may want to ask your doctor about the possibility of something else going on if you're not sure. At the very least, it might give you piece of mind. Hope you're feeling better soon! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 I also had worse symptoms with regular Ursodiol including horrible headaches. I've been on Urso Forte a year now and tolerate it great and at 12mg/kg. It keeps my liver enzymes down ( accept when I have cholangitis from my stent) SandsUC 2002, PSC 11/07Sent: Thursday, January 29, 2009 5:08 PMTo: Subject: Re: I'm on Urso, but...Hi! I'm so sorry to hear you're feeling worse. I have a lot of the symptoms that you're talking about. I'm not sure what form of Urso you're on, but when I was on Ursodiol, I was continually in pain, vomiting and nauseous. They switched me to Urso Forte and that definitely made a difference. As to whether what's happening to you is PSC related or not, I can't give you an answer. You may want to ask your doctor about the possibility of something else going on if you're not sure. At the very least, it might give you piece of mind. Hope you're feeling better soon! Sandi in VA Messages in this topic (8) Reply (via web post) | [The entire original message is not included] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 I also had worse symptoms with regular Ursodiol including horrible headaches. I've been on Urso Forte a year now and tolerate it great and at 12mg/kg. It keeps my liver enzymes down ( accept when I have cholangitis from my stent) SandsUC 2002, PSC 11/07Sent: Thursday, January 29, 2009 5:08 PMTo: Subject: Re: I'm on Urso, but...Hi! I'm so sorry to hear you're feeling worse. I have a lot of the symptoms that you're talking about. I'm not sure what form of Urso you're on, but when I was on Ursodiol, I was continually in pain, vomiting and nauseous. They switched me to Urso Forte and that definitely made a difference. As to whether what's happening to you is PSC related or not, I can't give you an answer. You may want to ask your doctor about the possibility of something else going on if you're not sure. At the very least, it might give you piece of mind. Hope you're feeling better soon! Sandi in VA Messages in this topic (8) Reply (via web post) | [The entire original message is not included] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 I also had worse symptoms with regular Ursodiol including horrible headaches. I've been on Urso Forte a year now and tolerate it great and at 12mg/kg. It keeps my liver enzymes down ( accept when I have cholangitis from my stent) SandsUC 2002, PSC 11/07Sent: Thursday, January 29, 2009 5:08 PMTo: Subject: Re: I'm on Urso, but...Hi! I'm so sorry to hear you're feeling worse. I have a lot of the symptoms that you're talking about. I'm not sure what form of Urso you're on, but when I was on Ursodiol, I was continually in pain, vomiting and nauseous. They switched me to Urso Forte and that definitely made a difference. As to whether what's happening to you is PSC related or not, I can't give you an answer. You may want to ask your doctor about the possibility of something else going on if you're not sure. At the very least, it might give you piece of mind. Hope you're feeling better soon! Sandi in VA Messages in this topic (8) Reply (via web post) | [The entire original message is not included] Quote Link to comment Share on other sites More sharing options...
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