My daughter is having a liver biopsy to test for autoimmune hepatitis. She was also just diagnosed with Crohn's. How serious is autoimmune hepatitis? Can it be treated? Does it require a liver transplant?
@marie69 I'm sure this has to be difficult for you not having answers to help your daughter. Are you able to share how your daughter is doing? Have the doctors discussed any treatments or suggestions for your daughter for the Chron's?
My daughter is having a liver biopsy to test for autoimmune hepatitis. She was also just diagnosed with Crohn's. How serious is autoimmune hepatitis? Can it be treated? Does it require a liver transplant?
My daughter is having a liver biopsy to test for autoimmune hepatitis. She was also just diagnosed with Crohn's. How serious is autoimmune hepatitis? Can it be treated? Does it require a liver transplant?
Sorry to hear about what your daughter is going through. My daughter was diagnosed with autoimmune hepatitis a year ago. This is a life long disease but is treatable. Everyone responds differently to treatment, some are able to come off meds while others stay on meds their entire life and then others require liver transplant. We recently went to a conference geared solely toward autoimmune hepatitis and learned so much. You can find lots of info on the mayo clinic web site but I also suggest looking at the autoimmune hepatitis association web site. We are still very new to the disease and are still learning. Hope you find the answers and your daughter feels better.
Sorry to hear about what your daughter is going through. My daughter was diagnosed with autoimmune hepatitis a year ago. This is a life long disease but is treatable. Everyone responds differently to treatment, some are able to come off meds while others stay on meds their entire life and then others require liver transplant. We recently went to a conference geared solely toward autoimmune hepatitis and learned so much. You can find lots of info on the mayo clinic web site but I also suggest looking at the autoimmune hepatitis association web site. We are still very new to the disease and are still learning. Hope you find the answers and your daughter feels better.
Yeah took us a long time to really find someone to talk to as well. My daughter was hospitalized for 3 days and had a colonoscopy, endoscopy, and liver biopsy. When she went into hospital her liver enzymes were in the 600- 900 range. These are the alt, ast, and alkaline phosphate levels. Multiple other lab test that were confusing the Dr and after basically ruling everything else out and the hepatitis panal finally came back is when they went with the AIH. Long process to diagnose then she has had Labs every 6 weeks for the last year. Three meds later I think we finally found the one that is working for her.
My daughter is having a liver biopsy to test for autoimmune hepatitis. She was also just diagnosed with Crohn's. How serious is autoimmune hepatitis? Can it be treated? Does it require a liver transplant?
@marie69, I want to encourage you to read the information that @johnbishop has shared with you about autoimmune hepatitis. You will read that the goal fo treatment is to slow or stop the progression of the disease. Organ transplant is condisered only when all other interventions have failed.
-Here is information about Crohn's Disease. https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
- Both of these diseases are autoimmune in nature, and it is not unusual for them to appear together.
Marie, I was once suspected to have AIH, and have had my share of liver biopsies. I did need a transplant for another liver disease. It is important that your daughter is getting care from a qualified specialist. My PCP sent me to a GI (gastroenterologist) who was very knowledgeable about liver issues.
How old is your daughter? Do you have a GI (gastroenterologist)?
@marie69, I want to encourage you to read the information that @johnbishop has shared with you about autoimmune hepatitis. You will read that the goal fo treatment is to slow or stop the progression of the disease. Organ transplant is condisered only when all other interventions have failed.
-Here is information about Crohn's Disease. https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
- Both of these diseases are autoimmune in nature, and it is not unusual for them to appear together.
Marie, I was once suspected to have AIH, and have had my share of liver biopsies. I did need a transplant for another liver disease. It is important that your daughter is getting care from a qualified specialist. My PCP sent me to a GI (gastroenterologist) who was very knowledgeable about liver issues.
How old is your daughter? Do you have a GI (gastroenterologist)?
I am on the list as they call it.Its a very painful disease.Me .When my water weight came.When I used to be around 190. Turned to 260.1 different water pills prednisone loads of potassium and that awful lactalose.These meds helped me at least to get some good days back.It is scary to know you have it and how you go from day to day and not know if that sick and cold feeling is going to be there.That your going to be the 1st one germs attack.You can't let it beat you.Your scared cause you want to live.So you learn as much about it as you possibly can.Medicine has made huge research on us.I have 4 grown children.And if I have to leave because of this I'll take the test.It might be hereditary.Maybe I can help them or someone.
Yeah took us a long time to really find someone to talk to as well. My daughter was hospitalized for 3 days and had a colonoscopy, endoscopy, and liver biopsy. When she went into hospital her liver enzymes were in the 600- 900 range. These are the alt, ast, and alkaline phosphate levels. Multiple other lab test that were confusing the Dr and after basically ruling everything else out and the hepatitis panal finally came back is when they went with the AIH. Long process to diagnose then she has had Labs every 6 weeks for the last year. Three meds later I think we finally found the one that is working for her.
@jtg8771, I am well acquainted with the regular routine labs. I began to feel like a pin cushion along my liver journey..
It sounds promising that your daughter might be on a medicine that is helping her.
I was once thought to have AIH (autoimmune hepatitis) by my GI. But he was not certain that was my problem and he sent me to a liver specialist for a 2nd opinion. I share this because I want you to know that if she is not having satisfactory results, that might be something to consider.
Does your daughter have any symptoms like fatigue or nausea?
I am on the list as they call it.Its a very painful disease.Me .When my water weight came.When I used to be around 190. Turned to 260.1 different water pills prednisone loads of potassium and that awful lactalose.These meds helped me at least to get some good days back.It is scary to know you have it and how you go from day to day and not know if that sick and cold feeling is going to be there.That your going to be the 1st one germs attack.You can't let it beat you.Your scared cause you want to live.So you learn as much about it as you possibly can.Medicine has made huge research on us.I have 4 grown children.And if I have to leave because of this I'll take the test.It might be hereditary.Maybe I can help them or someone.
@gering69341, Waiting for a transplant can be a painful and lonely time. I am a transplant recipient (Liver and Kidney 2009), I want to invite you to join me in the Transplant Group. You are welcome to join into any of the discussions by reading, and/or posting a comment or question.
My recommendation for a good beginning for you is "Liver pre-transplant question". I am confident that is you make a posted message, that you will be greeted by new friends who have experienced what you are now experiencing. You do not have to be alone. https://connect.mayoclinic.org/discussion/liver-pre-transplant-question/
I look forward to meeting you there.
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Hello @marie69, welcome to Connect.
There is another discussion you might find helpful for your daughter's newly diagnosed Chron's disease.
> Groups > Autoimmune Diseases > Crohn's Disease
-- https://connect.mayoclinic.org/discussion/crohns-disease-2/
Here is some information on autoimmune hepatitis that may provide some of the answers you are looking for:
Autoimmune hepatitis - Diagnosis & Treatment
-- https://www.mayoclinic.org/diseases-conditions/autoimmune-hepatitis/diagnosis-treatment/drc-20352158
@marie69 I'm sure this has to be difficult for you not having answers to help your daughter. Are you able to share how your daughter is doing? Have the doctors discussed any treatments or suggestions for your daughter for the Chron's?
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Hug
2 ReactionsMy daughter is having a liver biopsy to test for autoimmune hepatitis. She was also just diagnosed with Crohn's. How serious is autoimmune hepatitis? Can it be treated? Does it require a liver transplant?
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Helpful -
Hug
1 ReactionSorry to hear about what your daughter is going through. My daughter was diagnosed with autoimmune hepatitis a year ago. This is a life long disease but is treatable. Everyone responds differently to treatment, some are able to come off meds while others stay on meds their entire life and then others require liver transplant. We recently went to a conference geared solely toward autoimmune hepatitis and learned so much. You can find lots of info on the mayo clinic web site but I also suggest looking at the autoimmune hepatitis association web site. We are still very new to the disease and are still learning. Hope you find the answers and your daughter feels better.
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4 ReactionsThanks for answering.I surely will look.It took me a long time to find some one.I felt alone so long
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3 ReactionsSo far I have had 3 liver biopsies.No comfortable
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2 ReactionsYeah took us a long time to really find someone to talk to as well. My daughter was hospitalized for 3 days and had a colonoscopy, endoscopy, and liver biopsy. When she went into hospital her liver enzymes were in the 600- 900 range. These are the alt, ast, and alkaline phosphate levels. Multiple other lab test that were confusing the Dr and after basically ruling everything else out and the hepatitis panal finally came back is when they went with the AIH. Long process to diagnose then she has had Labs every 6 weeks for the last year. Three meds later I think we finally found the one that is working for her.
-
Like -
Helpful -
Hug
3 Reactions@marie69, I want to encourage you to read the information that @johnbishop has shared with you about autoimmune hepatitis. You will read that the goal fo treatment is to slow or stop the progression of the disease. Organ transplant is condisered only when all other interventions have failed.
-Here is information about Crohn's Disease.
https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
- Both of these diseases are autoimmune in nature, and it is not unusual for them to appear together.
Marie, I was once suspected to have AIH, and have had my share of liver biopsies. I did need a transplant for another liver disease. It is important that your daughter is getting care from a qualified specialist. My PCP sent me to a GI (gastroenterologist) who was very knowledgeable about liver issues.
How old is your daughter? Do you have a GI (gastroenterologist)?
-
Like -
Helpful -
Hug
2 ReactionsI am on the list as they call it.Its a very painful disease.Me .When my water weight came.When I used to be around 190. Turned to 260.1 different water pills prednisone loads of potassium and that awful lactalose.These meds helped me at least to get some good days back.It is scary to know you have it and how you go from day to day and not know if that sick and cold feeling is going to be there.That your going to be the 1st one germs attack.You can't let it beat you.Your scared cause you want to live.So you learn as much about it as you possibly can.Medicine has made huge research on us.I have 4 grown children.And if I have to leave because of this I'll take the test.It might be hereditary.Maybe I can help them or someone.
-
Like -
Helpful -
Hug
3 Reactions@jtg8771, I am well acquainted with the regular routine labs. I began to feel like a pin cushion along my liver journey..
It sounds promising that your daughter might be on a medicine that is helping her.
I was once thought to have AIH (autoimmune hepatitis) by my GI. But he was not certain that was my problem and he sent me to a liver specialist for a 2nd opinion. I share this because I want you to know that if she is not having satisfactory results, that might be something to consider.
Does your daughter have any symptoms like fatigue or nausea?
-
Like -
Helpful -
Hug
2 Reactions@gering69341, Waiting for a transplant can be a painful and lonely time. I am a transplant recipient (Liver and Kidney 2009), I want to invite you to join me in the Transplant Group. You are welcome to join into any of the discussions by reading, and/or posting a comment or question.
My recommendation for a good beginning for you is "Liver pre-transplant question". I am confident that is you make a posted message, that you will be greeted by new friends who have experienced what you are now experiencing. You do not have to be alone. https://connect.mayoclinic.org/discussion/liver-pre-transplant-question/
I look forward to meeting you there.
-
Like -
Helpful -
Hug
2 Reactions