Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Cheryl -- what exactly is AIH? I will certainly mention it to Dr. Pratt when I see him at the end of the month. I really need to have that " what can you tell me about my long term prognosis " chat with him. I'm hoping that the comparative MRCP and biopsy results will give some indication as to how fast or slow my progression is. I've heard my PSC described as " indolent, " which is fine by me. I hope that my PSC is a particularly lazy sort! Just out of curiosity -- does anyone else with a dominant stricture ever feel the sludge passing through the common bile duct? I get this weird feeling from time to time and can't think of what else it might be. Also -- who knows -- maybe all my fatigue is related to being 40 with two small children and trying to do too much. Some days, I get on my feet because I really have no other choice. As my grandmother used to say, it's better to wear out than to rust out. Colleen UC 08/1984 PSC 08/2000 I'm a Tigger -- how about you? > For what it's worth I think your AST and ALT seem quite high for PSC. Is it possible you have AIH/PSC overlap syndrome? That is what they finally diagnosed me with. Clear back pr dx they give me brief dx of PBC, AIH/autoimmune cholangitis syndrome, treat me with prednisone, finally did ERCP, then dx me with PSC, took me off of pred, then two years ago agreed I really did have PSC/AIH with overlap syndrome. I hope the 6-mp works for you. > I too am suffering terribly from fatigue, itching, and pain. Take care, Cheryl in ID, PSC/AIH, UC, fibromyalgia,etc > > Re: I'm still kicking! > > > Yep! That is it! Thanks Genevieve! > > > > Colleen > > > > > > > > Imuran is probably the trade name you're thinking about > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Colleen, AIH is Auto-immune hepatitis. This is a condition comparable with PSC, but this condition responds to immunosuppressant drugs (unlike PSC) My doctor once explained the difference between fatigue and being tired from too much work and stress. When you are overworked you will get out of your bed feeling better than before you went to sleep, and you will stay that way at least till the late afternoon. Fatigue can make that you get up being as tired as when you went to sleep, or can knock you out before noon in such a way that you have to lay down and rest. Of course everyone is different, and there is a lot of gray area in between. I brought it up because I tend to fall asleep in front of the television at night lately. He did not consider that fatigue. Regards, Chaim Boermeester, Israel P.S. If you like doing laundry you should come and live here. Today we have a strong wind from the east (Jordanian desert) and when you are finished hanging up the laundry outside you can start taking off the first dry articles. You also have to take them down ASAP because otherwise they will be dirty from the sand within an hour. From: [mailto: ] On Behalf Of Colleen Garvey Kueter Sent: Tuesday, April 15, 2008 13:51 To: Subject: Re: imuran 6-mp/ AIH Cheryl -- what exactly is AIH? I will certainly mention it to Dr. Pratt when I see him at the end of the month. I really need to have that " what can you tell me about my long term prognosis " chat with him. I'm hoping that the comparative MRCP and biopsy results will give some indication as to how fast or slow my progression is. I've heard my PSC described as " indolent, " which is fine by me. I hope that my PSC is a particularly lazy sort! Just out of curiosity -- does anyone else with a dominant stricture ever feel the sludge passing through the common bile duct? I get this weird feeling from time to time and can't think of what else it might be. Also -- who knows -- maybe all my fatigue is related to being 40 with two small children and trying to do too much. Some days, I get on my feet because I really have no other choice. As my grandmother used to say, it's better to wear out than to rust out. Colleen UC 08/1984 PSC 08/2000 I'm a Tigger -- how about you? > For what it's worth I think your AST and ALT seem quite high for PSC. Is it possible you have AIH/PSC overlap syndrome? That is what they finally diagnosed me with. Clear back pr dx they give me brief dx of PBC, AIH/autoimmune cholangitis syndrome, treat me with prednisone, finally did ERCP, then dx me with PSC, took me off of pred, then two years ago agreed I really did have PSC/AIH with overlap syndrome. I hope the 6-mp works for you. > I too am suffering terribly from fatigue, itching, and pain. Take care, Cheryl in ID, PSC/AIH, UC, fibromyalgia,etc > > Re: I'm still kicking! > > > Yep! That is it! Thanks Genevieve! > > > > Colleen > > > > > > > > Imuran is probably the trade name you're thinking about > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Colleen, AIH is Auto-immune hepatitis. This is a condition comparable with PSC, but this condition responds to immunosuppressant drugs (unlike PSC) My doctor once explained the difference between fatigue and being tired from too much work and stress. When you are overworked you will get out of your bed feeling better than before you went to sleep, and you will stay that way at least till the late afternoon. Fatigue can make that you get up being as tired as when you went to sleep, or can knock you out before noon in such a way that you have to lay down and rest. Of course everyone is different, and there is a lot of gray area in between. I brought it up because I tend to fall asleep in front of the television at night lately. He did not consider that fatigue. Regards, Chaim Boermeester, Israel P.S. If you like doing laundry you should come and live here. Today we have a strong wind from the east (Jordanian desert) and when you are finished hanging up the laundry outside you can start taking off the first dry articles. You also have to take them down ASAP because otherwise they will be dirty from the sand within an hour. From: [mailto: ] On Behalf Of Colleen Garvey Kueter Sent: Tuesday, April 15, 2008 13:51 To: Subject: Re: imuran 6-mp/ AIH Cheryl -- what exactly is AIH? I will certainly mention it to Dr. Pratt when I see him at the end of the month. I really need to have that " what can you tell me about my long term prognosis " chat with him. I'm hoping that the comparative MRCP and biopsy results will give some indication as to how fast or slow my progression is. I've heard my PSC described as " indolent, " which is fine by me. I hope that my PSC is a particularly lazy sort! Just out of curiosity -- does anyone else with a dominant stricture ever feel the sludge passing through the common bile duct? I get this weird feeling from time to time and can't think of what else it might be. Also -- who knows -- maybe all my fatigue is related to being 40 with two small children and trying to do too much. Some days, I get on my feet because I really have no other choice. As my grandmother used to say, it's better to wear out than to rust out. Colleen UC 08/1984 PSC 08/2000 I'm a Tigger -- how about you? > For what it's worth I think your AST and ALT seem quite high for PSC. Is it possible you have AIH/PSC overlap syndrome? That is what they finally diagnosed me with. Clear back pr dx they give me brief dx of PBC, AIH/autoimmune cholangitis syndrome, treat me with prednisone, finally did ERCP, then dx me with PSC, took me off of pred, then two years ago agreed I really did have PSC/AIH with overlap syndrome. I hope the 6-mp works for you. > I too am suffering terribly from fatigue, itching, and pain. Take care, Cheryl in ID, PSC/AIH, UC, fibromyalgia,etc > > Re: I'm still kicking! > > > Yep! That is it! Thanks Genevieve! > > > > Colleen > > > > > > > > Imuran is probably the trade name you're thinking about > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Colleen, AIH is Auto-immune hepatitis. This is a condition comparable with PSC, but this condition responds to immunosuppressant drugs (unlike PSC) My doctor once explained the difference between fatigue and being tired from too much work and stress. When you are overworked you will get out of your bed feeling better than before you went to sleep, and you will stay that way at least till the late afternoon. Fatigue can make that you get up being as tired as when you went to sleep, or can knock you out before noon in such a way that you have to lay down and rest. Of course everyone is different, and there is a lot of gray area in between. I brought it up because I tend to fall asleep in front of the television at night lately. He did not consider that fatigue. Regards, Chaim Boermeester, Israel P.S. If you like doing laundry you should come and live here. Today we have a strong wind from the east (Jordanian desert) and when you are finished hanging up the laundry outside you can start taking off the first dry articles. You also have to take them down ASAP because otherwise they will be dirty from the sand within an hour. From: [mailto: ] On Behalf Of Colleen Garvey Kueter Sent: Tuesday, April 15, 2008 13:51 To: Subject: Re: imuran 6-mp/ AIH Cheryl -- what exactly is AIH? I will certainly mention it to Dr. Pratt when I see him at the end of the month. I really need to have that " what can you tell me about my long term prognosis " chat with him. I'm hoping that the comparative MRCP and biopsy results will give some indication as to how fast or slow my progression is. I've heard my PSC described as " indolent, " which is fine by me. I hope that my PSC is a particularly lazy sort! Just out of curiosity -- does anyone else with a dominant stricture ever feel the sludge passing through the common bile duct? I get this weird feeling from time to time and can't think of what else it might be. Also -- who knows -- maybe all my fatigue is related to being 40 with two small children and trying to do too much. Some days, I get on my feet because I really have no other choice. As my grandmother used to say, it's better to wear out than to rust out. Colleen UC 08/1984 PSC 08/2000 I'm a Tigger -- how about you? > For what it's worth I think your AST and ALT seem quite high for PSC. Is it possible you have AIH/PSC overlap syndrome? That is what they finally diagnosed me with. Clear back pr dx they give me brief dx of PBC, AIH/autoimmune cholangitis syndrome, treat me with prednisone, finally did ERCP, then dx me with PSC, took me off of pred, then two years ago agreed I really did have PSC/AIH with overlap syndrome. I hope the 6-mp works for you. > I too am suffering terribly from fatigue, itching, and pain. Take care, Cheryl in ID, PSC/AIH, UC, fibromyalgia,etc > > Re: I'm still kicking! > > > Yep! That is it! Thanks Genevieve! > > > > Colleen > > > > > > > > Imuran is probably the trade name you're thinking about > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 I have UC/J-pouch/pouchitis/PSC & AIH. I'm taking ursodiol, flagyl, prednisone & imuran. I was diagnosed by the blood test, including an anti-mitochondial antibody test (I think) and then a liver biopsy. -Marie Marie To: From: cswb@...Date: Tue, 15 Apr 2008 14:25:46 -0600Subject: Re: imuran 6-mp/ AIH Colleen, sorry Auto-immune Hepatitis. AIH actually causes the hepatocytes (liver cells) to inflame and scar. When the liver cells die they release AST and ALT into the blood stream. Higher ALT and AST levels are indicative of many cells dying. PSC damages the ducts and the death to the cells is more of a collateral damage to the cells themselves. That is one of the reasons that PSC people are often transplanted later because unlike other liver diseases, cholastatic liver diseases,e.g., PSC, Primary Bilarary Cirrosis, autoimmune cholangitis, etc., kill the cells indirectly. Cholestatic diseases are characteristic of having high Alkaline Phosphatate and GGTP numbers. Anyone may correct me if my memory fails. Higher AST and ALT levels can also be influenced by flares in PSC, physical activity that gives you lots of sore muscles. As our livers become more cirrosed AST and ALT levels often drop. They determined that I really did have AIH because of the change in my AST/ALT numbers when Iwas taken off 6-mp. AIH is often treated with prednisone and Imurane or 6-mp. Hope that information helps you. Happy to share the info. Take care, Cheryl ID, PSC/AIH/UC, fibromyalgia,etc. married 30 years, six kids 6-28, HS English teacher (disability)> > Cheryl -- what exactly is AIH?> > Colleen> > > > > > > > > > > > > >> >> > > > > Use video conversation to talk face-to-face with Windows Live Messenger. Get started! Quote Link to comment Share on other sites More sharing options...
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