Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Thanks Irene for the welcome. I've already gained alot from being here the last few days. And know I will continue to gain. I have been counting down the days til chat time ( posted on front page) I have never been in a chat room - so please bare with me as I learn. I just hope everything goes well so I can attend !!!!!!!! I'm sure you all know what I mean. Cinda > Cinda, welcome to our group. It is a very good one. The people are > friendly, caring, loving and very supportive. If you have anymore questions, > ask away, someone will probably have the answer. if you feel like venting, > this is the place to do it. There is always someone to listen. > > Take care, > Irene > > Books may well be the only true magic > Alice Hoffman > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Thanks Irene for the welcome. I've already gained alot from being here the last few days. And know I will continue to gain. I have been counting down the days til chat time ( posted on front page) I have never been in a chat room - so please bare with me as I learn. I just hope everything goes well so I can attend !!!!!!!! I'm sure you all know what I mean. Cinda > Cinda, welcome to our group. It is a very good one. The people are > friendly, caring, loving and very supportive. If you have anymore questions, > ask away, someone will probably have the answer. if you feel like venting, > this is the place to do it. There is always someone to listen. > > Take care, > Irene > > Books may well be the only true magic > Alice Hoffman > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2002 Report Share Posted May 23, 2002 Thanks Irene for the welcome. I've already gained alot from being here the last few days. And know I will continue to gain. I have been counting down the days til chat time ( posted on front page) I have never been in a chat room - so please bare with me as I learn. I just hope everything goes well so I can attend !!!!!!!! I'm sure you all know what I mean. Cinda > Cinda, welcome to our group. It is a very good one. The people are > friendly, caring, loving and very supportive. If you have anymore questions, > ask away, someone will probably have the answer. if you feel like venting, > this is the place to do it. There is always someone to listen. > > Take care, > Irene > > Books may well be the only true magic > Alice Hoffman > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 --- I do know what you mean! I have enough mush to win the Ididorod or whatever it is called when then sled dogs race. Welcome home. In @y..., " suemarr1954 " wrote: > Hi, everyone, I just joined the group today. My name is . I > have had Fibromyalgia symptoms for about 16+ years. This past year > seems to have been worse for some reason...or did I just forget the > other years?!?!? ;-) Seems I have been in this " fibrofog " for > weeks. My brain is like mush. I work full time and am able to get > my job done, but by the end of the day, there is nothing left. I > know you all know what I am talking about. > > Anyway, I just wanted to check in. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Hi, My name is Enid Cresson. I was diagnosed in August, 2008 with PSC. I have been ill with a low grade fever and extreme fatigue since June, 2005. At the time I received my diagnosis, I was also diagnosed with Graves disease. All the doctors I have seen have not been very helpful in explaining things to me or being able to address my fatigue. I'd like to find out if anyone has been able to treat there fatigue with success. Also my PSC has started mostly in the Bilary Tree on the left side and don't know if the progression will go to my liver sooner than if it had started in the CBD. Lately, my cholestrol has become high and would like to know if that is because of the disease in the ducts or the liver. I'm quite thin and can't believe that my cholesterol is high. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Hi Enid; Welcome to the group. Sorry to hear about your fatigue and low grade fever, and elevated cholesterol. Perhaps others will comment on the fatigue issue, but here I'd like to tackle your cholesterol question. Cholesterol can come from two sources; the diet, and assembly from small molecules in the body. Cholesterol from both sources is then used to make bile in the liver, which is normally excreted into the bile ducts and eventually ends up in the intestines. In " cholestatic " liver diseases like primary sclerosing cholangitis, and primary biliary cirrhosis, the bile flow out of the liver is impaired, and so bile acids build up and tend to slow down the conversion of cholesterol into bile acids. The net result is that cholesterol builds up. In primary biliary cirrhosis there is good evidence that ursodeoxycholic acid helps restores bile flow, and helps lower cholesterol. Also it seems that cholesterol-lowering drugs, such as fibrates and statins can help improve liver biochemistry. This is described in an article from Swiss Medical Weekly (2008) http://www.smw.ch/docs/pdf200x/2008/29/smw-12311.pdf " Ursodeoxycholic acid is an established treatment for primary biliary cirrhosis: it has been shown to improve significantly transplantation free survival in these patients. Nevertheless, some 50% of patients do not achieve a complete response, with persistent elevated alkaline phosphatase levels, and are at risk for disease progression. It is important to identify medications with which these patients could be treated. The literature shows that fibrates as well as statins could be prescribed to patients with PBC, not only to reduce hypercholesterolaemia but also to improve PBC. Simvastatin and bezafibrate are two medications which, specifically, deserve to be formally studied in larger randomised controlled trials. " I would imagine that such cholesterol-lowering drugs might have similar types of effects in PSC, but currently, there are only a few reports of beneficial effects in PSC patients treated in Japan, and there havn't been any large trials yet in the U.S.A. Anyway, ther clearly are treatment options for high cholesterol in cholestatic liver disease. Maybe trying to improve bile flow by taking urosdeoxycholic acid would be a place to start, if you are not already taking this drug? 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 February 19, 2009 Report Share Posted February 19, 2009 Hi Enid; Welcome to the group. Sorry to hear about your fatigue and low grade fever, and elevated cholesterol. Perhaps others will comment on the fatigue issue, but here I'd like to tackle your cholesterol question. Cholesterol can come from two sources; the diet, and assembly from small molecules in the body. Cholesterol from both sources is then used to make bile in the liver, which is normally excreted into the bile ducts and eventually ends up in the intestines. In " cholestatic " liver diseases like primary sclerosing cholangitis, and primary biliary cirrhosis, the bile flow out of the liver is impaired, and so bile acids build up and tend to slow down the conversion of cholesterol into bile acids. The net result is that cholesterol builds up. In primary biliary cirrhosis there is good evidence that ursodeoxycholic acid helps restores bile flow, and helps lower cholesterol. Also it seems that cholesterol-lowering drugs, such as fibrates and statins can help improve liver biochemistry. This is described in an article from Swiss Medical Weekly (2008) http://www.smw.ch/docs/pdf200x/2008/29/smw-12311.pdf " Ursodeoxycholic acid is an established treatment for primary biliary cirrhosis: it has been shown to improve significantly transplantation free survival in these patients. Nevertheless, some 50% of patients do not achieve a complete response, with persistent elevated alkaline phosphatase levels, and are at risk for disease progression. It is important to identify medications with which these patients could be treated. The literature shows that fibrates as well as statins could be prescribed to patients with PBC, not only to reduce hypercholesterolaemia but also to improve PBC. Simvastatin and bezafibrate are two medications which, specifically, deserve to be formally studied in larger randomised controlled trials. " I would imagine that such cholesterol-lowering drugs might have similar types of effects in PSC, but currently, there are only a few reports of beneficial effects in PSC patients treated in Japan, and there havn't been any large trials yet in the U.S.A. Anyway, ther clearly are treatment options for high cholesterol in cholestatic liver disease. Maybe trying to improve bile flow by taking urosdeoxycholic acid would be a place to start, if you are not already taking this drug? 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 April 5, 2009 Report Share Posted April 5, 2009 Hi , Glad you found us but sorry you had to find us. I will start out by saying that I have been sick since 1994 with symptoms of PSC; however, I was not diagnosed until 2003. Given my symptoms I have had it for over 15 years and am still going strong. Your husbands symptoms sound very similar to mine, I throw up a lot, belch a lot, my urine is orange. I am going through a bout of weight loss right now. The fatigue, oh my what can I say. Your husband may have PSC and UC or Crohns they often run together. SOme one else gave you the links to some of the literature, please read them and ask us and the doctors a lot of questions. The people on this site are really great. Dawn > > hello > My husband was recently diagonesed with psc about a month ago. I have alot of questions for one before we got the diagonisis he was first diagonesed, with chrohns, then they took that back and said he had ulcerative colonitis, then they took that back now he has psc. The symptons were within the past year he dropped about 4o pounds, now i have been with my husband for 14 years and he has always been itching, so they said his enzymes were up we never thought much of the itching all these years.Another thing that makes our situation complicated is that as a child he was born with an enlarged liver and he was really sick from the age of 6 till about ten he used to throw up couldnt eat or anything then he was treated with predisone and everything stopped we cannot get hold of these earlier records because they did not keep records back then we are relying on his mom's memory so now during the past year his urine went from regular color to orange to that > dirty color he had pancretis about 2 months ago so they removed his gallbladder, then they gave him and ercp they said the removed stones and slush and that's what caused the pancreatis, we came home only two weeks later and he was still throwing up and still sick we went back to the hospital and they did another ercp and said they had left some gallstones in there. The thing i don't understand is they say he has had liver disease for about 15 years but i thought you cannot survive past ten years. They have him on uradosil, pentanasa, cholestraynamine, asocal. He is always tired and he can only eat so much if he eats too much he throws up, and if he is not throwing up he is puping everything he ate he is weak he cannot gain any weight. Now his ankles, knees are swollen I dont know we go back to his doctor on the 17th of april, but i dont think they are getting right, i have made another appointment with another liver doctor, i would appreciate any > suggestions or any feedback. My husband is 44 years old. > > lost and confused > Quote Link to comment Share on other sites More sharing options...
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