Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Richelle, If I understand it correctly, AIH is a condition not unlike PSC, causing inflammation to liver cells instead of the bile ducts. The main difference between AIH and PSC is that AIH is a " proper " anti-immune disorder and usually responds to treatment by steroids (unlike PSC). AIH and PSC are known to have an " overlap syndrome " . I am sure more knowledgeable minds will respond soon. Please check out this link. http://www.mayoclinic.com/health/autoimmune-hepatitis/DS00676 Chaim Boermeester, Israel From: [mailto: ] On Behalf Of Richelle Bool Sent: Tuesday, November 18, 2008 07:52 To: Subject: Auto Immune Hepatitis Hi I went and saw my gastro doc a couple of weeks ago and had blood tests while I was there. Some of them were ok, others weren't but apparently I've got an elevated anti nuclear antibody (whatever that means). The following are her words: " I think that you should have a liver biopsy. You may have an overlap syndrome with a component of auto immune hepatitis (google that). This means that the liver damage may be able to be slowed possibly stopped with the use of medications. " Does anyone have any experience of this. I have small duct psc and uc but I'm not taking any medication which is my choice. They would like to have me on drugs. I'm not keen on the liver biopsy because I've had them before (approx 10 years ago) and I've never forgotten how painful they are. I'm also supposed to be having yearly colonoscopies (yippee) but I've decided to forgo them for the moment as well. If someone could explain what AIH is, in nice simple terms, and is it something else I need to worry about, I would be most greatful. Thanks. Richelle Christchurch, New Zealand Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Richelle, If I understand it correctly, AIH is a condition not unlike PSC, causing inflammation to liver cells instead of the bile ducts. The main difference between AIH and PSC is that AIH is a " proper " anti-immune disorder and usually responds to treatment by steroids (unlike PSC). AIH and PSC are known to have an " overlap syndrome " . I am sure more knowledgeable minds will respond soon. Please check out this link. http://www.mayoclinic.com/health/autoimmune-hepatitis/DS00676 Chaim Boermeester, Israel From: [mailto: ] On Behalf Of Richelle Bool Sent: Tuesday, November 18, 2008 07:52 To: Subject: Auto Immune Hepatitis Hi I went and saw my gastro doc a couple of weeks ago and had blood tests while I was there. Some of them were ok, others weren't but apparently I've got an elevated anti nuclear antibody (whatever that means). The following are her words: " I think that you should have a liver biopsy. You may have an overlap syndrome with a component of auto immune hepatitis (google that). This means that the liver damage may be able to be slowed possibly stopped with the use of medications. " Does anyone have any experience of this. I have small duct psc and uc but I'm not taking any medication which is my choice. They would like to have me on drugs. I'm not keen on the liver biopsy because I've had them before (approx 10 years ago) and I've never forgotten how painful they are. I'm also supposed to be having yearly colonoscopies (yippee) but I've decided to forgo them for the moment as well. If someone could explain what AIH is, in nice simple terms, and is it something else I need to worry about, I would be most greatful. Thanks. Richelle Christchurch, New Zealand Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Richelle, If I understand it correctly, AIH is a condition not unlike PSC, causing inflammation to liver cells instead of the bile ducts. The main difference between AIH and PSC is that AIH is a " proper " anti-immune disorder and usually responds to treatment by steroids (unlike PSC). AIH and PSC are known to have an " overlap syndrome " . I am sure more knowledgeable minds will respond soon. Please check out this link. http://www.mayoclinic.com/health/autoimmune-hepatitis/DS00676 Chaim Boermeester, Israel From: [mailto: ] On Behalf Of Richelle Bool Sent: Tuesday, November 18, 2008 07:52 To: Subject: Auto Immune Hepatitis Hi I went and saw my gastro doc a couple of weeks ago and had blood tests while I was there. Some of them were ok, others weren't but apparently I've got an elevated anti nuclear antibody (whatever that means). The following are her words: " I think that you should have a liver biopsy. You may have an overlap syndrome with a component of auto immune hepatitis (google that). This means that the liver damage may be able to be slowed possibly stopped with the use of medications. " Does anyone have any experience of this. I have small duct psc and uc but I'm not taking any medication which is my choice. They would like to have me on drugs. I'm not keen on the liver biopsy because I've had them before (approx 10 years ago) and I've never forgotten how painful they are. I'm also supposed to be having yearly colonoscopies (yippee) but I've decided to forgo them for the moment as well. If someone could explain what AIH is, in nice simple terms, and is it something else I need to worry about, I would be most greatful. Thanks. Richelle Christchurch, New Zealand Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Hi Richelle,AIH is a serious liver illness that leads to liver failure if untreated. You need a liver biopsy to diagnose it. Talk to your doctor to let him/her know your concerns about pain involved with the biopsy. There are immunosuppressant drugs that may be able to control the disease so that a liver transplant won't be necessary, or at least not now. As you no doubt know, the other option to a liver transplant is death. So the drugs don't seem so bad when you look at the alternative. Liver failure can happen pretty quickly, so this is not something I would postpone.But I wouldn't postpone the colonoscopies either. I almost got colon cancer, so the colonoscopies saved my life, along with the colectomy. I also would treat the UC with medication, as complications of UC can be fatal.The immunosuppresant drugs will treat the AIH, but not the PSC. It may be better to take the attitude that you will plan for the worst (i.e. colon cancer or liver cancer or liver failure), but hope for the best (no cancer or liver failure). I know someone who very recently only hoped for the best, and wasn't preparing for the worst, and almost didn't get a liver when he needed it. His recovery from the transplant is now pretty brutal, since he was so sick and near death at the time of transplant. All the worrying and planning regarding UC, PSC & AIH is difficult, but hopefully it will pay off, and if I need it, I'll get a liver transplant, and I'll do well afterwards.Wishing you the best of luck. Please write to let us know how this goes for you.Marie To: From: boolshit@...Date: Tue, 18 Nov 2008 05:51:41 +0000Subject: Auto Immune Hepatitis Hi I went and saw my gastro doc a couple of weeks ago and had blood tests while I was there. Some of them were ok, others weren't but apparently I've got an elevated anti nuclear antibody (whatever that means). The following are her words: "I think that you should have a liver biopsy. You may have an overlap syndrome with a component of auto immune hepatitis (google that). This means that the liver damage may be able to be slowed possibly stopped with the use of medications." Does anyone have any experience of this. I have small duct psc and uc but I'm not taking any medication which is my choice. They would like to have me on drugs. I'm not keen on the liver biopsy because I've had them before (approx 10 years ago) and I've never forgotten how painful they are. I'm also supposed to be having yearly colonoscopies (yippee) but I've decided to forgo them for the moment as well. If someone could explain what AIH is, in nice simple terms, and is it something else I need to worry about, I would be most greatful. Thanks. Richelle Christchurch, New Zealand Windows Live Hotmail now works up to 70% faster. Sign up today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Hi Richelle,AIH is a serious liver illness that leads to liver failure if untreated. You need a liver biopsy to diagnose it. Talk to your doctor to let him/her know your concerns about pain involved with the biopsy. There are immunosuppressant drugs that may be able to control the disease so that a liver transplant won't be necessary, or at least not now. As you no doubt know, the other option to a liver transplant is death. So the drugs don't seem so bad when you look at the alternative. Liver failure can happen pretty quickly, so this is not something I would postpone.But I wouldn't postpone the colonoscopies either. I almost got colon cancer, so the colonoscopies saved my life, along with the colectomy. I also would treat the UC with medication, as complications of UC can be fatal.The immunosuppresant drugs will treat the AIH, but not the PSC. It may be better to take the attitude that you will plan for the worst (i.e. colon cancer or liver cancer or liver failure), but hope for the best (no cancer or liver failure). I know someone who very recently only hoped for the best, and wasn't preparing for the worst, and almost didn't get a liver when he needed it. His recovery from the transplant is now pretty brutal, since he was so sick and near death at the time of transplant. All the worrying and planning regarding UC, PSC & AIH is difficult, but hopefully it will pay off, and if I need it, I'll get a liver transplant, and I'll do well afterwards.Wishing you the best of luck. Please write to let us know how this goes for you.Marie To: From: boolshit@...Date: Tue, 18 Nov 2008 05:51:41 +0000Subject: Auto Immune Hepatitis Hi I went and saw my gastro doc a couple of weeks ago and had blood tests while I was there. Some of them were ok, others weren't but apparently I've got an elevated anti nuclear antibody (whatever that means). The following are her words: "I think that you should have a liver biopsy. You may have an overlap syndrome with a component of auto immune hepatitis (google that). This means that the liver damage may be able to be slowed possibly stopped with the use of medications." Does anyone have any experience of this. I have small duct psc and uc but I'm not taking any medication which is my choice. They would like to have me on drugs. I'm not keen on the liver biopsy because I've had them before (approx 10 years ago) and I've never forgotten how painful they are. I'm also supposed to be having yearly colonoscopies (yippee) but I've decided to forgo them for the moment as well. If someone could explain what AIH is, in nice simple terms, and is it something else I need to worry about, I would be most greatful. Thanks. Richelle Christchurch, New Zealand Windows Live Hotmail now works up to 70% faster. Sign up today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Hi Richelle,AIH is a serious liver illness that leads to liver failure if untreated. You need a liver biopsy to diagnose it. Talk to your doctor to let him/her know your concerns about pain involved with the biopsy. There are immunosuppressant drugs that may be able to control the disease so that a liver transplant won't be necessary, or at least not now. As you no doubt know, the other option to a liver transplant is death. So the drugs don't seem so bad when you look at the alternative. Liver failure can happen pretty quickly, so this is not something I would postpone.But I wouldn't postpone the colonoscopies either. I almost got colon cancer, so the colonoscopies saved my life, along with the colectomy. I also would treat the UC with medication, as complications of UC can be fatal.The immunosuppresant drugs will treat the AIH, but not the PSC. It may be better to take the attitude that you will plan for the worst (i.e. colon cancer or liver cancer or liver failure), but hope for the best (no cancer or liver failure). I know someone who very recently only hoped for the best, and wasn't preparing for the worst, and almost didn't get a liver when he needed it. His recovery from the transplant is now pretty brutal, since he was so sick and near death at the time of transplant. All the worrying and planning regarding UC, PSC & AIH is difficult, but hopefully it will pay off, and if I need it, I'll get a liver transplant, and I'll do well afterwards.Wishing you the best of luck. Please write to let us know how this goes for you.Marie To: From: boolshit@...Date: Tue, 18 Nov 2008 05:51:41 +0000Subject: Auto Immune Hepatitis Hi I went and saw my gastro doc a couple of weeks ago and had blood tests while I was there. Some of them were ok, others weren't but apparently I've got an elevated anti nuclear antibody (whatever that means). The following are her words: "I think that you should have a liver biopsy. You may have an overlap syndrome with a component of auto immune hepatitis (google that). This means that the liver damage may be able to be slowed possibly stopped with the use of medications." Does anyone have any experience of this. I have small duct psc and uc but I'm not taking any medication which is my choice. They would like to have me on drugs. I'm not keen on the liver biopsy because I've had them before (approx 10 years ago) and I've never forgotten how painful they are. I'm also supposed to be having yearly colonoscopies (yippee) but I've decided to forgo them for the moment as well. If someone could explain what AIH is, in nice simple terms, and is it something else I need to worry about, I would be most greatful. Thanks. Richelle Christchurch, New Zealand Windows Live Hotmail now works up to 70% faster. Sign up today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Thanks Marie and Chaim for your replies. I will keep you posted, Marie, on what happens but don't expect a reply in a hurry. For two reasons: 1) I still haven't decided what to do and 2) PSC, UC and AIH are treated under the public health system in New Zealand which is just as crappy as every other public health system in the world. I do have medical insurance but it means nothing for these diseases and many others. So, if I do decide to have a liver biopsy and colonoscopy I will be waiting for a while anyway. You are not treated as a person, you are just a number. That is my experience anyway. Cheers Richelle Christchurch, New Zealand > > > Hi Richelle, > > AIH is a serious liver illness that leads to liver failure if untreated. You need a liver biopsy to diagnose it. Talk to your doctor to let him/her know your concerns about pain involved with the biopsy. There are immunosuppressant drugs that may be able to control the disease so that a liver transplant won't be necessary, or at least not now. As you no doubt know, the other option to a liver transplant is death. So the drugs don't seem so bad when you look at the alternative. Liver failure can happen pretty quickly, so this is not something I would postpone. > > But I wouldn't postpone the colonoscopies either. I almost got colon cancer, so the colonoscopies saved my life, along with the colectomy. I also would treat the UC with medication, as complications of UC can be fatal. > > The immunosuppresant drugs will treat the AIH, but not the PSC. > > It may be better to take the attitude that you will plan for the worst (i.e. colon cancer or liver cancer or liver failure), but hope for the best (no cancer or liver failure). I know someone who very recently only hoped for the best, and wasn't preparing for the worst, and almost didn't get a liver when he needed it. His recovery from the transplant is now pretty brutal, since he was so sick and near death at the time of transplant. All the worrying and planning regarding UC, PSC & AIH is difficult, but hopefully it will pay off, and if I need it, I'll get a liver transplant, and I'll do well afterwards. > > Wishing you the best of luck. Please write to let us know how this goes for you. > > Marie > > > > > > > > To: > From: boolshit@... > Date: Tue, 18 Nov 2008 05:51:41 +0000 > Subject: Auto Immune Hepatitis > > > > > > > > > > > > > > > > > > > > > Hi > > I went and saw my gastro doc a couple of weeks ago and had blood > > tests while I was there. Some of them were ok, others weren't but > > apparently I've got an elevated anti nuclear antibody (whatever that > > means). The following are her words: > > > > " I think that you should have a liver biopsy. You may have an > > overlap syndrome with a component of auto immune hepatitis (google > > that). This means that the liver damage may be able to be slowed > > possibly stopped with the use of medications. " > > > > Does anyone have any experience of this. I have small duct psc and > > uc but I'm not taking any medication which is my choice. They would > > like to have me on drugs. I'm not keen on the liver biopsy because > > I've had them before (approx 10 years ago) and I've never forgotten > > how painful they are. I'm also supposed to be having yearly > > colonoscopies (yippee) but I've decided to forgo them for the moment > > as well. If someone could explain what AIH is, in nice simple terms, > > and is it something else I need to worry about, I would be most > > greatful. Thanks. > > > > Richelle > > Christchurch, New Zealand > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > Windows Live Hotmail now works up to 70% faster. > http://windowslive.com/Explore/Hotmail? ocid=TXT_TAGLM_WL_hotmail_acq_faster_112008 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2008 Report Share Posted November 18, 2008 Thanks Marie and Chaim for your replies. I will keep you posted, Marie, on what happens but don't expect a reply in a hurry. For two reasons: 1) I still haven't decided what to do and 2) PSC, UC and AIH are treated under the public health system in New Zealand which is just as crappy as every other public health system in the world. I do have medical insurance but it means nothing for these diseases and many others. So, if I do decide to have a liver biopsy and colonoscopy I will be waiting for a while anyway. You are not treated as a person, you are just a number. That is my experience anyway. Cheers Richelle Christchurch, New Zealand > > > Hi Richelle, > > AIH is a serious liver illness that leads to liver failure if untreated. You need a liver biopsy to diagnose it. Talk to your doctor to let him/her know your concerns about pain involved with the biopsy. There are immunosuppressant drugs that may be able to control the disease so that a liver transplant won't be necessary, or at least not now. As you no doubt know, the other option to a liver transplant is death. So the drugs don't seem so bad when you look at the alternative. Liver failure can happen pretty quickly, so this is not something I would postpone. > > But I wouldn't postpone the colonoscopies either. I almost got colon cancer, so the colonoscopies saved my life, along with the colectomy. I also would treat the UC with medication, as complications of UC can be fatal. > > The immunosuppresant drugs will treat the AIH, but not the PSC. > > It may be better to take the attitude that you will plan for the worst (i.e. colon cancer or liver cancer or liver failure), but hope for the best (no cancer or liver failure). I know someone who very recently only hoped for the best, and wasn't preparing for the worst, and almost didn't get a liver when he needed it. His recovery from the transplant is now pretty brutal, since he was so sick and near death at the time of transplant. All the worrying and planning regarding UC, PSC & AIH is difficult, but hopefully it will pay off, and if I need it, I'll get a liver transplant, and I'll do well afterwards. > > Wishing you the best of luck. Please write to let us know how this goes for you. > > Marie > > > > > > > > To: > From: boolshit@... > Date: Tue, 18 Nov 2008 05:51:41 +0000 > Subject: Auto Immune Hepatitis > > > > > > > > > > > > > > > > > > > > > Hi > > I went and saw my gastro doc a couple of weeks ago and had blood > > tests while I was there. Some of them were ok, others weren't but > > apparently I've got an elevated anti nuclear antibody (whatever that > > means). The following are her words: > > > > " I think that you should have a liver biopsy. You may have an > > overlap syndrome with a component of auto immune hepatitis (google > > that). This means that the liver damage may be able to be slowed > > possibly stopped with the use of medications. " > > > > Does anyone have any experience of this. I have small duct psc and > > uc but I'm not taking any medication which is my choice. They would > > like to have me on drugs. I'm not keen on the liver biopsy because > > I've had them before (approx 10 years ago) and I've never forgotten > > how painful they are. I'm also supposed to be having yearly > > colonoscopies (yippee) but I've decided to forgo them for the moment > > as well. If someone could explain what AIH is, in nice simple terms, > > and is it something else I need to worry about, I would be most > > greatful. Thanks. > > > > Richelle > > Christchurch, New Zealand > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > Windows Live Hotmail now works up to 70% faster. > http://windowslive.com/Explore/Hotmail? ocid=TXT_TAGLM_WL_hotmail_acq_faster_112008 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2008 Report Share Posted November 21, 2008 Hi Richelle,Good luck to you. Hopefully the liver biopsy won't be painful. I don't recall that it was that painful (but at the time the needle went in it was uncomfortable, but only for a very brief moment). I'm on imuran & prednisone for AIH, although I'm now down to 9 mg of prednisone a day. You're very brave and courageous. And I think you're doing the right thing. If you're afraid, but you still do it (knowing you need to do it), then in my book you're brave & courageous. But hopefully you will find that this is not as difficult as you fear.Make SURE the doctor checks your INR and or protime level before the liver biopsy to make sure your bleeding time is okay.You'll do fine.And yeah, take one thing at a time. Next up is the colonoscopy.Marie To: From: boolshit@...Date: Thu, 20 Nov 2008 04:29:16 +0000Subject: Auto Immune Hepatitis Hi Now that I've had a few replies to my initial post I have spoken to my gastro dr via email a couple of times today and I'm going to have the liver biopsy. It can be done under the private health system so I will be doing that. I won't be on steroids but I will be on Azathioprine (also known as Azasan or Imuran). Obviously I will only be on the drugs if it is confirmed that I have AIH. Now all I have to do is try and block out the pain of the biopsy. Thanks to those that replied, I don't think I would have had it done otherwise. Now, I need someone to talk me into having a colonoscopy! Nah, don't worry about it, I will save that for next year. Cheers Richelle Christchurch, New Zealand Color coding for safety: Windows Live Hotmail alerts you to suspicious email. Sign up today. Quote Link to comment Share on other sites More sharing options...
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