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Posted 11/17/2006 6:43 PM (GMT 0)
I was just diagnosed with Autoimmune Hepatitis and I have no idea what I am up against!!! I am a single mother and my kids need me. What am I looking at here? I also have Addison's Disease and Hypo-Thyroid. Are stomach aches normal? My doctor isn't much help, she would not give me any details, just wants to send me to more specialists.

Help!!!!!!
Posted 11/18/2006 11:34 AM (GMT 0)
Welcome Steviejo:

I too have autoimmune hepatitis and there are several others here that are living this disease, so you are not alone. Your doctor is right to send you to a specialist, they will be able to give you a much better perspective on what you will need to do. Currenly I am taking prednisone to help suppress my immune system and usro to aide with the bile duct problems that I have. Immune suppressants seem to be the choice in controling this disease

I am curious as to what tests you have already had to determine that you have AIH. If you haven't had a biopsy he may order one to determine what kind of damage has been done to our liver if any and to check for certain markers that indicate AIH over other types of liver problems. I know initially I had really frequent blood work panels run to rule out other issues and to determine how well medication was working. Currenly I have liver panels run on a monthly basis and ever other month also a full screen run.

I have had some nausea off and on during the course of this, but my major complaint has been fatigue and muscle spasms and cramps, particularly in my legs. I think it affects everyone to some degree differently so it should be something that you talk with your doctor about.

This forum has some wonderful people on it and I have read from some that they have lived productive lives for 20+ years with this disease. I know you are scared so was I, not knowing what all of this means or how it will affect you and your family. I have two teenage boys and although I am not a single mom, my first thoughts were of how this would be for them and if I would be here for them when they need me. I have found a lot of hope and strength from this forum. I has been wonderful to know that others have gone through what I am going through and that I am not alone. I hope you use this for youself and please keep us posted on how things are going.

Hope this day is wonderful for you,

Lucy
Posted 11/18/2006 1:35 PM (GMT 0)
welcome steviejo!
Im sure you are scared and worried,and though I know its easier said then done,try to not get too worried until you see the specialist. I do not have autoimmune hep,my husband has chronic hep b,and one thing ive learned is,alot of drs do NOT understand hep,,,,even some specialist. My husband had to change his GI because he was basically dealing with my husbands hep b,as though it were hep c,,,,,,,and they are different...please wait until a specialist confirms the diagnosis and THEN grill the specialist,educate yourself,and play an active role in your own health. I know this is a scary time for you,and please feel free to vent or just talk on this forum. there are a few others dealing with this problem that will come along soon enough... and lucy was right,your NOT alone! take care steviejoe,and let us know what the specialist tells you.
:hug: we will be here to help you with support! have a good day and my thoughts will be with you.
Posted 11/20/2006 4:31 PM (GMT 0)

Hi Steviejo - I was diagnosed with AIH a little over 3 years ago.  I was EXTREMELY healthy up to that point.  Until, I started getting very tired then the nausea, vomiting and jaundice started.  I was first diagnosed with stress and then was scheduled to have my gall bladder removed and was in the hospital when the surgeon spoke up and said there is something else going on.  I was immediately transferred to a Liver Transplant center almost 3 hours away from home.  I was tested and tested and tested and tested and tested for EVERYTHING under the sun, all the while my labs were getting worse and worse.  FINALLY, literally hours away from complete liver failure I was placed on Prednisone after all the test results revealed nothing.  The very next day my ALT's and AST's finally started to drop.  After almost a month the hopsital I was sent home.  I was on EXTREMELY high doses of Prednisone for almost a year and then slowing started to drop the Prednisone and started me on Imuran.  I was also on Nexium for about 3 months and then fianlly the nausea went away.  After 6 months on both Prednisone and Imuran, I stopped taking Prednisone completely  I was then taking 50 mg of Imuran for six months every day and then 25 mg every day and currently 25 mg every other day.  My ALT and AST's have been normal for almost 2 years.  I have a follow-up appointment next month and hopefully will be able to stop the Imuran completely.  I have been VERY fortunate to have had very little side-effects from the Predonise or Imuran.  A puffy face while on the higher doses of Predonise and a little hair loss with the Imuran.  I have read there is another drug that some AIH patients have started to take.  Like frustrated_n-wv stated GO SEE A SPECIALIST, if you have not already.  It would have saved several months of nausea and stress if I had seen one sooner. Good luck - hang in there, keep us posted and hoped this helped - -  JP  :-)

Posted 11/20/2006 5:14 PM (GMT 0)
Hello Everyone,

I cannot tell you how good it makes me feel to have people who understand!! I have blood work every six months due to medications that I take for my Addison's disease and Hypo-thyroid (one of them is hydrocortisone) and two months ago they noticed that my enzymes were elevated (which has happened before) in the past for some reason they just went down on their own. They then took tons of blood and the next thing I know they tell me congratulations you don't have Hepatitis A,B or C but you have autoimmune hepatitis. Then she tells me that my body is attacking my liver like it did my adrenal glands (reason I have Addison's Disease) she mentioned something about ANA smooth muscle something. I don't remember much I just kind of went into a transe. I am having her fax me my records to see just what blood work she did. She then gave me the hep shot-1st series.

All I know is my family has a hard time understanding. One day I feel good and feel like cleaning and going outside etc. and the next day I can hardly move and feel like I have been run over by a Mac Truck!!!

I forget things, I am sick to my stomach and when I am not sick to my stomach, it hurts. I know all to well the side effects of steriods and I am not looking forward to it. They want to start me on 60mg. of prednisone on top of the 25mg of hydrocortisone that I already take. My Dad has cancer of the prostate and colon and he is on Goji juice and his tumor has all but disappeared so he sent me some and told me to take it every day. I have been on it for 7 days so I will keep you all posted of my progress. Thanks for being here everyone and god bless you.

Steph
Posted 11/20/2006 10:13 PM (GMT 0)
Steph,
I know about the one day feeling good,the other like there is not a drop of energy left in you. My husband is very much like that,only he has alot more bad days then good anymore..its like we as a family have to go with the flow always,,,,we cant plan anything in advance,unless it doesnt involve my husband. Your family will eventually understand ,maybe someone could go with you to the appt with the specialist,to help you remember info and also so they have a good understanding of your problems. I experienced a severe case of acute hep b,(my body finally fought it off on its own),,and i was in a daze for 3 mths,,,i barely remember that time in my life and what i do remember,is fuzzy and i was very confused. Maybe thats why i understand a little bit more about what hubby is going through,but its still not easy to deal with..please help your family be informed,,,,knowledge gives you power and strength,,something your family will need to help you through all this.. take care
Posted 4/25/2014 7:55 AM (GMT 0)

Steviejo said...
I was just diagnosed with Autoimmune Hepatitis and I have no idea what I am up against!!! I am a single mother and my kids need me. What am I looking at here? I also have Addison's Disease and Hypo-Thyroid. Are stomach aches normal? My doctor isn't much help, she would not give me any details, just wants to send me to more specialists.

Help!!!!!!

. Hi steviejo, i have Addison's disease but i stopped taking cortisone 6 weeks ago and found a cure its a natural cortisol Pregnenolone. It's amazing after u get through the side effects of stopping cortisone u feel wonderful. I really suggest u do this it will save your life . Look up pregnenolone on the net it will tell u its a precursor to cortisol . And not man made . It's bio identical look into it saved my life. I have had addisions for 18 years and 5 years leading up to Addison's and a lot of sickness hope this helps God Bless Myst
Posted 4/25/2014 7:59 AM (GMT 0)
Hi im Myst , i have had Addison's disease for 18 years and just quit cortisone . I have found a cure and its natural with no side effects . My life has been awful to say the lest until now!!! I feel amazing at 41years old . If u want any more info just email me . Been cortisone free for 6 weeks yay!!! Thx
Posted 4/25/2014 2:18 PM (GMT 0)
Myst3333,

Thank you for joining the Healing Well Hepatitis forum.

You have responded to a thread from 2006, which won't get much attention from current members.

You need to start a new thread if you would like to be a participating member and tell us about your struggles with liver disease.

Please know that our forum has no medical practitioners moderating, we are all just volunteers.

We are pretty careful about recommendations for unregulated supplements. The major hepatitis centers want their patients to stick pretty closely to the recommended regimens for each patient. As we are not medical professionals, we stay clear of "prescribing". Reporting your success is okay, but we would not allow "selling" or representing a supplement for sale and we would have to remove that post. As you have not included your email in your profile, we will let it stand that someone who wants to look up the supplement you took can do that. But no selling or promoting stuff for sale here.

Thanks, Mama Lama
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