Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Hi , My name is Bob and I am a new Member of the Psc Disease. I have recently, been diagnosed with the disease ( 2weeks ago). I have been in a state of numbness since .Doctors stated that there is not much they can do to slow down the progression of Psc. I had an MRCP done where they found " millions of stones" which was cleared out. and a stent was placed in one of the ducts. Six weeks later I had another MRCP with Spyglass Tech and the stent was removed. No stones developed and I was clear. I am on a medicine called Ursodiol the doctor wants to bring me up to 4 pills a day for my body weight. I was getting sick on the pill at first; nausea's,and I stopped taking it. But the doctor said lets try with your food then I'm now taking one pill a day for three weeks with meals then 2 pills for three weeks and so on until I reach 4 pills. I do have some questions maybe some one can help me with: Does categories of the disease exist. In other word my symptoms would be like a certain level? I don't know where I stand in respect with other people with PSC. How far am I along with my symptoms ( episodes of jaundice, high liver counts, and occasional pain on the right side. Strong enough pain that put me in the hospital in September). My doctor put me on a low fat diet has anyone had success with this ? When were people getting new livers? What were there symptoms? Just how fast does the disease progress? Is everyone different in progression? I am new to the group and to PSC. I asking for some help because I am a little to say the least distraught and worried. I feel helpless right now.. Thank you for your time, Bob Capobianco Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Hi Bob welcome to the group. Sorry to hear of your diagnosis. I was diagnosed in May of this year and this group has been very helpful. I am sure that there are many that have lots more info than me, but you may find www.unos.org helpful and www.liverfoundation.org. Everyone progresses differently and some do not ever need a liver transplant. Ursodiol is probably the most common medication used by people with this disease and usually in large doses. My doctor at Baylor All Saints said there really is not a current " ranking " for this disease. There is a MELD score that is used my unos to rank who is in most need of an liver when one becomes available. > > Hi , > My name is Bob and I am a new Member of the Psc Disease. I have recently, been diagnosed > with the disease ( 2weeks ago). I have been in a state of numbness since .Doctors stated that there is not much they > can do to slow down the progression of Psc. I had an MRCP done where they found " millions of stones " which was cleared out. > and a stent was placed in one of the ducts. Six weeks later I had another MRCP with Spyglass Tech and the stent was removed. No stones > developed and I was clear. I am on a medicine called Ursodiol the doctor wants to bring me up to 4 pills a day for my body weight. > I was getting sick on the pill at first; nausea's,and I stopped taking it. But the doctor said lets try with your food then I'm now taking one pill a day for three weeks with meals then 2 pills for three weeks and so on until I reach 4 pills. > I do have some questions maybe some one can help me with: > Does categories of the disease exist. In other word my symptoms would be like a certain level? I don't know where I stand in respect with other people with PSC. How far am I along with my symptoms ( episodes of jaundice, high liver counts, and occasional pain on the right side. Strong enough pain that put me in the hospital in September). > My doctor put me on a low fat diet has anyone had success with this ? When were people getting new livers? What were there symptoms? Just how fast does the disease progress? Is everyone different in progression? > I am new to the group and to PSC. I asking for some help because I am a little to say the least distraught and worried. > I feel helpless right now.. > > Thank you for your time, > > Bob Capobianco > > > ______________________________________________________________________ ______________ > Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Hi Bob; Welcome to the group. Sorry that your PSC diagnosis brings you here, but glad that you found us. Try to hang in there with the ursodiol for a while. It's likely to help thin your bile, and allow for better bile flow, as long as you keep well hydrated. When our son was diagnosed with PSC 4.5 years ago, his serum alanine aminotransferase (ALT) and aspartate aminotransferase (ALT) returned to near normal within a few weeks after taking ursodiol. His alkaline phosphatase (ALP) (500 units at diagnosis) did not decline as rapidly as his ALT and AST, but has slowly fallen back to near normal (now 150; 140 is the upper limit of 'normal') over the last 4.5 years. We're not sure how much of this is due to ursodiol (he takes 2000 mg/day), or to other drugs and supplements he is also taking (asacol for ulcerative colitis, rifampin for itching, vitamins, folic acid, and fish oils). It may be a response to the combination? The elevated ALT and AST are kind of a measure of how much damage to the hepatocyte cells of the liver is ongoing. ALT and AST are made by hepatocytes and released into the blood stream when hepatocytes are damaged or die. This can occur when toxic bile acids build up in the liver. Alkaline phosphatase (ALP) is more of a measure of the degree of bile-duct blockage or injury. But the more important measures of overall liver function are serum albumin (which is synthesized by the liver), and international normalized ratio (INR) (which is a measure of blood clotting ability; many blood clotting factors are produced by the liver). ALT, AST, ALP and bilirubin can fluctuate quite a bit depending on bile duct blockages. If these blockages are relieved, these lab values may return to near normal, and your symptoms (jaundice, upper right quadrant pain) may go way. So you can't really tell how far you are along with the disease based on serum liver enzyme values and symptoms. Some centers do liver biopsies to stage the disease. They typically stage it based on how the liver cells and bile ducts look under the microscope, and classify it into 4 stages, with stage 4 being cirrhosis. But since you have not had a biopsy by the sounds of it, I would doubt that it would be possible to tell you what stage of PSC you may be in. The rate of progression seems to be highly variable between individuals, and so we can't really make any predictions there either. Sorry! Our son was diagnosed at stage 2, over four years ago. Because he hasn't had a biopsy since diagnosis, we're not sure if he has progressed. His liver function tests now look very near normal, and his serum albumin level is within the normal range. He's worked hard to take his meds daily, and not drink any alcohol, to lay off fatty foods (especially pizza), to try to eat small nutritious meals, and to exercise, and keep hydrated. Fortunately, he has not had any serious health problems since diagnosis time. And we hope it stays that way. We were also numb and in a state of shock when we found out that our son had PSC and ulcerative colitis. We set about reading everything we could about PSC and inflammatory bowel disease (IBD). The good news is that there's a huge amount of progress being made in understanding the genetic basis and mechanisms of autoimmune and inflammatory diseases. Hopefully, with further research the IBD mystery will soon be solved, and then researchers can begin to focus more on the extra-intestinal manifestations, like PSC. Perhaps in 10 years there will be medications and treatments that we can't yet imagine? It's the hope for a cure or a more effective treatment that keeps me going. And for keeping hope alive, I can also thank the members of this group, PSC Partners Seeking a Cure, and the Foundation, to name but a few. Best regards, Dave R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 , You should put a copyright sign under your writings. I saved this explanation fur future reference. Chaim Boermeester, Israel From: [mailto: ] On Behalf Of Sent: Wednesday, December 12, 2007 07:10 To: Subject: Re: Psc questions Hi Bob; Welcome to the group. Sorry that your PSC diagnosis brings you here, but glad that you found us. Try to hang in there with the ursodiol for a while. It's likely to help thin your bile, and allow for better bile flow, as long as you keep well hydrated. When our son was diagnosed with PSC 4.5 years ago, his serum alanine aminotransferase (ALT) and aspartate aminotransferase (ALT) returned to near normal within a few weeks after taking ursodiol. His alkaline phosphatase (ALP) (500 units at diagnosis) did not decline as rapidly as his ALT and AST, but has slowly fallen back to near normal (now 150; 140 is the upper limit of 'normal') over the last 4.5 years. We're not sure how much of this is due to ursodiol (he takes 2000 mg/day), or to other drugs and supplements he is also taking (asacol for ulcerative colitis, rifampin for itching, vitamins, folic acid, and fish oils). It may be a response to the combination? The elevated ALT and AST are kind of a measure of how much damage to the hepatocyte cells of the liver is ongoing. ALT and AST are made by hepatocytes and released into the blood stream when hepatocytes are damaged or die. This can occur when toxic bile acids build up in the liver. Alkaline phosphatase (ALP) is more of a measure of the degree of bile-duct blockage or injury. But the more important measures of overall liver function are serum albumin (which is synthesized by the liver), and international normalized ratio (INR) (which is a measure of blood clotting ability; many blood clotting factors are produced by the liver). ALT, AST, ALP and bilirubin can fluctuate quite a bit depending on bile duct blockages. If these blockages are relieved, these lab values may return to near normal, and your symptoms (jaundice, upper right quadrant pain) may go way. So you can't really tell how far you are along with the disease based on serum liver enzyme values and symptoms. Some centers do liver biopsies to stage the disease. They typically stage it based on how the liver cells and bile ducts look under the microscope, and classify it into 4 stages, with stage 4 being cirrhosis. But since you have not had a biopsy by the sounds of it, I would doubt that it would be possible to tell you what stage of PSC you may be in. The rate of progression seems to be highly variable between individuals, and so we can't really make any predictions there either. Sorry! Our son was diagnosed at stage 2, over four years ago. Because he hasn't had a biopsy since diagnosis, we're not sure if he has progressed. His liver function tests now look very near normal, and his serum albumin level is within the normal range. He's worked hard to take his meds daily, and not drink any alcohol, to lay off fatty foods (especially pizza), to try to eat small nutritious meals, and to exercise, and keep hydrated. Fortunately, he has not had any serious health problems since diagnosis time. And we hope it stays that way. We were also numb and in a state of shock when we found out that our son had PSC and ulcerative colitis. We set about reading everything we could about PSC and inflammatory bowel disease (IBD). The good news is that there's a huge amount of progress being made in understanding the genetic basis and mechanisms of autoimmune and inflammatory diseases. Hopefully, with further research the IBD mystery will soon be solved, and then researchers can begin to focus more on the extra-intestinal manifestations, like PSC. Perhaps in 10 years there will be medications and treatments that we can't yet imagine? It's the hope for a cure or a more effective treatment that keeps me going. And for keeping hope alive, I can also thank the members of this group, PSC Partners Seeking a Cure, and the Foundation, to name but a few. Best regards, Dave R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Hi Bob, Welcome to the group. I'm sorry to hear about your diagnosis, but glad you found this resource, as so many of us have. It's been valuable to me to share stories and know that others have shared in our experiences. I encourage you to read as much of the available literature as possible to find answers to your questions. Also, after you read the available literature, don't stop asking questions of your doctors. If they don't know the answers, ask them to find out! Here is a link to the PSC literature website. http://www.psc-literature.org/ Lastly, you'll hear this from others in the group, but I want to reiterate it. Everyone responds differently to the disease. There are people fortunate enough to be symtpom free after diagnosis. Others progress differently, feeling the awful symptoms of itching, pain, and eventually a liver transplant. It sounds like you have laready experienced some pain, and had an ERCP. I'm sorry you have to experience those things. Please know that there is a network of us out here that are united in our empathy, caring, and support of you and everyone else in this situation. In other words, you are not alone in this. Take care of yourself, and please let us know how youare doing. - Severin Severin Garanzuay PSC, UC 2007 > > Hi , > My name is Bob and I am a new Member of the Psc Disease. I have recently, been diagnosed Quote Link to comment Share on other sites More sharing options...
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