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Old 02-18-2010, 09:16 AM   #1
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jaye54 HB User
autoimmuneheppatitus

I am hoping that there is someone out there that I can discuss my AIH with..im feeling alone in this illness and would like to find someone who suffers from the same affliction...i guess misery loves company

 
Old 03-02-2010, 05:26 PM   #2
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gcbpgh HB User
Re: autoimmuneheppatitus

What would you like to discuss......Do you have autoimmune hepatitis with another disease. I have sjogrens which has caused autoimmune hep.....it needs to be treated but I have trouble with every medicine they put me on so far.....whats your story.
Gcb in pgh

 
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Old 03-07-2010, 01:12 PM   #3
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Re: autoimmuneheppatitus

I also have it however I am not being treated right now for it since my levels are stable. I do get fatigue and now I found out I have a vitamin D deficiency! What's next?

 
Old 03-07-2010, 01:25 PM   #4
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Re: autoimmuneheppatitus

If you google "autoimmune hepatitis" and you read from reputable sites, Mayo clinic, John Hopkins, National Health Institute etc. it tells you towards the end of every one that it must be treated. If not treated survival rate is five years approximately or a transplant.
Do not let a doctor neglect you. If yours isn't treating you then you need to find another one. Look it up and learn and be your own advocate....its your life. And learn how to fight for it with the doctors.....its your first battle. Ask questions and make them answer you. Be calm and Write everything down....good luck....

Gcb in pgh

 
Old 03-08-2010, 05:10 AM   #5
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Re: autoimmuneheppatitus

Thanks for the response..i had to stop and look up sojourns first.this autoimmune stuff does like to take the wheel..ive been surfing the medical web alot...alot more than my brain can process i was diagnosed with aih in sept 08 and have progressed to stage 2 perifibrosis add to the list fatty liver and onset RA..looks like my dreamof bein a logbucker or ballroom dancer, might not come true...been testing the naturopathic and alternative approach but havnt found the right combo yet...i do believe its out there it may sound silly to some...but have invested in detox footbath...I really didnt have expectations when i tried it at an alternative clinic...but the guk that came out of my body....blew my mind...after 3 sessions it was amazing how much better I felt..i didnt need any pain med for 2 days...that is huge..pretty spendy but im sure its gonna pay foritself...not sure how to do it and take all the medication they have me on..but im gonna work on that...did they give you prednisone for your illness...seems to be a standard for autoimmune illness..there doesnt seem to be any gentle drug if the word auto immune is attached...its nice to have someone to bounce stuff off of...i could use an aih buddy...your the first to respond..take care hope to talk at you again....J

 
Old 03-08-2010, 05:24 AM   #6
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Re: autoimmuneheppatitus

meceate sorry about the name.. doesnt look right...did you have a liver biopsy?well if all your numbers are good id probably take a more natural approach because once they start you on the autoimmune drugs its almost impossible to be nice to your body..stress i believe is #1 trigger probably my hardest one...im a worrier..but workin on it listen to our gbc gal. information is utmost important..take care..let me know how your doin..im excited i have 2 people who have chatted with me now...yippeeee..gets kinda lonely out here sometimes....J

 
Old 03-08-2010, 07:21 AM   #7
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gcbpgh HB User
Re: autoimmuneheppatitus

Sjogrens is when your white cells chew on your moisture glands. Mostly they attack the mouth and eyes....my mouth is fine, teeth are good but my eyes were always dry but I had many allergies. Always fought bronchitis and pneumonia. Always lost my voice all winter....

Had to change careers due to chemicals I worked with and they blamed them....and I was always sick....in the interim my liver enzymes were always high, but no one told me or did anything.

Finally in 2007 I just basically got sick again with bronchitis and this time I could not wake up....slept like 20 hours a day....they did all kinds of tests...after 3 months my doctor said he could not help me....I sat there and cried...and said I was sick and he had to find what was wrong with me. Well, he says one test they did not do he could try...(and never looked at my liver enzymes) so he did it, called me 2 days later and said you have sjogrens, I had never heard of it.

I had to see a Immunologist or Rheumatologist....he found all my past blood work that showed my liver enzynes had been high for years. Off to a liver specialist, they did a liver biopsy and I have advanced cirrhosis. I never drank or did drugs....occasionally a glass of wine.

All from sjogrens. I also have nodules and massive scarring on my lungs from sjogrens but my teeth are great.... I had been to about 5 specialist, so they all didn't check out one test because my teeth were good and ignored the big sign of high liver enzymes.

Sjogrens can attack moisture glands anywhere in the body but it usually attacks the mouth and eyes. Many people have very bad teeth. They never went beyond the other symptoms I had for years. So it had been attacking my major organs, the lungs and liver. The doctors and I had gone to the same group for 30 years and other specialists had just not looked beyond the usual. I can't explain their reasons, I am just paying for it.

If you look up Sjogrens you will see its in the autoimmune family with some of your other illnesses. Make sure you have a good doctor with a fellowship.
Usually you find their education on the hospital website they are affiliated.

But there are not natural cures. I have looked. I have tried some....my numbers went off the charts. And don't just believe what your doctor says, look it up....they are not Gods....you need to address the autoimmune with some meds. I can't take the prednisone because of the liver at this point. good luck and change your dreams, its done all the time and learn that lesson....make new dreams, they turn out better you will see....and help others on the board.....people don't answer because they are sometimes too ill or tired....good luck.

Gcb in pgh

 
Old 04-10-2010, 02:35 AM   #8
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cat080908 HB User
Re: autoimmuneheppatitus

Hi there,
im writing because i believe i might have autoimmune hepatitis. Since i was 12 i have had some minor problems on and off with my liver, and because of that at 13 i could no longer get my hep b shots for school( the doc told my mom i was already immune to it). I'm now 22 and recently had a child 8 months ago and since then I've been living in a complete hell. It all started with extreme itching of my hands, arms, and legs, then the fatigue set in I can barely get out bed. Then i started getting abdominal pain on my upper right side, I always feel sick to my stomach. when i went to see my PCP, he ordered am ultrasound and all it showed was a very little amount of sludge in my gallbladder, but 2 out of 3 of a ALT test results came back abnormally high. At this point anytime i bring up my liver to my PCP he just changes the subject. So i was hoping someone with autoimmune hep. might be able to tell me if these were some of their symptoms or maybe a better way to approach the topic with my doctor
Thank you
Cat

 
Old 04-10-2010, 06:20 PM   #9
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gcbpgh HB User
Re: autoimmunhepatitis

Your PCP ignores you because he is not qualified to help you. You need to see a gastrologist that is a hepatologist. If you need a referral ask him for one and tell him you cannot ignore the pain any longer. Also, it should not go untreated. Since its out of his expertise he should have not problem giving you a referral. If he does change PCP.....you need a specialist. good luck....

Gcb in pgh

 
Old 04-11-2010, 03:37 AM   #10
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cat080908 HB User
Re: autoimmuneheppatitus

Thank you so much for your reply it means a lot to know there are people out there to talk to. I truly feel as through I've been going crazy. No one understands how I feel or what im going through. It's not for sure yet what i have but I'm pretty sure it's autoimmune hepatitis. I have had so many test and all of them have come back normal except my ALT, so every doctor I've been to has told me it's in my head and that I'm just over emotional. But I know whats happening is not normal. Can any of you please tell me your symptoms and what your doctors said so i can get a better understanding for what im in for next when I get to see a gastro. doctor??? If so that would so great!!
Thank you again,
cat

 
Old 04-11-2010, 07:34 AM   #11
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gcbpgh HB User
Re: autoimmuneheppatitus

My liver doctor found it in all the bloodwork he did. This is why your pcp is not qualified. Also, my doctors told me they didn't know what was wrong with me for years. By the time they found out I had advanced liver disease.
I don't drink, smoke etc. It was all autoimmune. They would tell me I look fine.

As though that was a way to diagnosis. They treat women different.
You have to be your own advocate. Look up autoimmune hepatitis. Compare your blood results. Always keep a copy of your blood work. Start saving things. You need to see an Immunologist also, they are under Rheumatology.

Go to your local hospital website. Look up doctors, see who has a fellowship under education, if under gastrology they aren't listed as a hepatology also then they do just other gastric issues. You have to find your own. Don't count on your doctor. Also, go to John Hopkins Website and read so you learn. National Health is good too but John Hopkins is one of the best websites. Fatigue is my worst symptom and body aches and pain.
Good luck
Gcb in pgh

 
Old 04-15-2010, 06:30 PM   #12
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mistral82 HB User
Re: autoimmuneheppatitus

Newly diagnosed with AIH today, I will be starting the prednizone route 40mg w/azathrioprine 50mg can anyone tell me when you started taking these meds. if you had any side effects and how you felt on them? I am not pleased with my Doc. and may switch. He was not forthcomming with info. I feel a bit lost. I would like to know some things to expect and is there anyone who has been successfull in getting off the meds?
I was glad to see there was a support site. I have a feeling I will get more info from here than any Dr. Is a gastroenterologist the only type of Dr that specializes in AIH? Looking for some guidance and would appreciate any info anyone can provide. I also have hypothyroidism. I see to be having issues with my eyes lately also. I have extreme fatigue, joint/muscle pain. help a newby. what is next? Wishing all good days.
Thanks

 
Old 04-15-2010, 11:00 PM   #13
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jaye54 HB User
Re: autoimmuneheppatitus

Quote:
Originally Posted by mistral82 View Post
Newly diagnosed with AIH today, I will be starting the prednizone route 40mg w/azathrioprine 50mg can anyone tell me when you started taking these meds. if you had any side effects and how you felt on them? I am not pleased with my Doc. and may switch. He was not forthcomming with info. I feel a bit lost. I would like to know some things to expect and is there anyone who has been successfull in getting off the meds?
I was glad to see there was a support site. I have a feeling I will get more info from here than any Dr. Is a gastroenterologist the only type of Dr that specializes in AIH? Looking for some guidance and would appreciate any info anyone can provide. I also have hypothyroidism. I see to be having issues with my eyes lately also. I have extreme fatigue, joint/muscle pain. help a newby. what is next? Wishing all good days.
Thanks
hey there mistral....it seems your in the worst part of it all...the not knowing whats going on is the worst...as gcb says educate yourself...some sites are medically undesypherable but there is alot of good sites out there that are understandable....for me the prednisone was what I think crack would be like...i was wired to the gills...shook inside...didnt sleep...couldnt stop moving....now its been almost 2 years im on 20 miligrams and cant really tell..I was on aziathioprine for a couple months ,but it made me very natious..so now im on cellcept...fatigue and muscle pain...thats my worst thorn right now...I bought myself an enhanced living detox footbath and I am in love with it...my pain level has decreased significantly since i started soakin....if you have an alternative medicine place they may have one you can try....first time youl feel like youve been hit by a bus...but it only gets better after that...this autoimmune hep is different...everyone reacts differently so they cant seem to find one standard regiment to follow.so you just keep trying and hope you find one that works for you...im still looking...my prayers are with you...good luck...jaye54

 
Old 04-15-2010, 11:15 PM   #14
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jaye54 HB User
Re: autoimmuneheppatitus

Quote:
Originally Posted by gcbpgh View Post
My liver doctor found it in all the bloodwork he did. This is why your pcp is not qualified. Also, my doctors told me they didn't know what was wrong with me for years. By the time they found out I had advanced liver disease.
I don't drink, smoke etc. It was all autoimmune. They would tell me I look fine.

As though that was a way to diagnosis. They treat women different.
You have to be your own advocate. Look up autoimmune hepatitis. Compare your blood results. Always keep a copy of your blood work. Start saving things. You need to see an Immunologist also, they are under Rheumatology.

Go to your local hospital website. Look up doctors, see who has a fellowship under education, if under gastrology they aren't listed as a hepatology also then they do just other gastric issues. You have to find your own. Don't count on your doctor. Also, go to John Hopkins Website and read so you learn. National Health is good too but John Hopkins is one of the best websites. Fatigue is my worst symptom and body aches and pain.
Good luck
Gcb in pgh
hey gcb
You actually pop in my mind alot...seems youve been on this road for a while...this auto immune thing seems to be a snowball rolling down a big hill..just dont know how many autoimmunities your gonna end up with by the time the snowball hits the bottom..I wrote to mistral about the footbath...if you have the opportunity to try it...do...its been a Godsend for me...how is your prognosis..are your numbers under control...well you take care...let me know how your doing...jaye54

 
Old 04-18-2010, 03:11 PM   #15
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mistral82 HB User
Re: autoimmuneheppatitus

Hey Jaye54,
Thanks for the insight,I feel a bit better knowing I can come on here and gain some knowledge. I think I may take you up on the detox foot bath that sounds like a winner. Do you suggest a brand? I will keep in touch.. I have some dental surgery to do before I start my meds. I will start the begining of May. I don't want to risk infection after I begin meds. Stay well. Thanks again

 
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