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Autoimmune Hepatitis & other autoimmune diseases

Hi,
Just wondering if any out there that are suffering from autoimmune hepatitis have other family members that have autoimmune diseases?  I have 2 brothers who both have autoimmune diseases plus a cousin who just passed from one.  In addition, my cousin who passed, her mother passed from Lupus in her forties. I have also been thru tx for HCV and am okay now for about yr and half.
Jody
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Avatar universal
Just wondering if any of you have had positive ASMA  with normal liver functions? My mom and all  her sisters all have autoimmune diseases. My ASMA was tested on  3 occations and all were positive, but my liver functions continue to be normal. I have severe fatigue and joint pain(shoulders and hips). My GI doc doesn't seem to be worried about the elevated antibodies. Oh, He also did several stool cultures on me that were all normal except one test showed high levels of fat in the stool???(I am 5'3", 95lbs, can't gain weight no matter what I do)  But I don't ever feel good anymore... Am I going crazy and why do I feel so BAD???
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Avatar universal
Hi everyone,
Been a while since I have been out here also.  I think it is time one of us started a new line of topic because this one takes so long to pull up because we have so many postings on it. So next person up, you are it please.
I have never heard the doctor say anything to me about doing a toxic test regarding the Imuran.  Now I am confused, but seem to be doing okay but something in me makes me extremely nervous sometimes & I was never that way before, so it is food for thought.
I am very glad for those whose alt & ast are good, but sad for those whose aren't that good, but none look really terrible.
Tenderheart2, I feel like you have been going thru some bad times, but I am glad they are able to do the shunt for you, they couldn't do it for my brother, everything was in too bad shape, those arteries are whatever they are were totally collapsed for him. I hope your bilirubin has gone back down since they put in the new shunts.
It has been very hot, humid & dry here, wish we would get some rain, tired of turning on the sprinklers & moving them around front & back yards all the time in addition to standing & watering all the plants.
Sarad, I know if you are in the hotel business at this time of year you are busy.  My cousin also is in that business near the International Airport & stays busy continually.
2youngforthis, I agree with you that you are too young & my heart goes out to you, but as Kim said, don't get discouraged. Things can & do change so keep that positive thought always to the forefront.  I have a relative who is only 4 yrs old who has it also.
We all have obviously had a busy summer, not much posting going on but please don't lose touch totally with each other because we are a support group.  Wishing all best of health until we talk again.  Jody
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Avatar universal
Well it's been a long time since I've been on line. I am in the Hotel business and the summer is a very busy time for me at work.
Well I had blod work done just over 2 weeks ago and everything is looking great.
AST-20 ALT-14 GGT-15 BILIRUBIN TOTAL-0.54 DIRECT-.11 even my cholesterol has gone down from over 250 to 200 and Cholesterol LDL from 150 to 118. I guess part of all this is having a great liver Dr. I can't thank him enough for giving me my health back. Now I keep praying that it will stay like this. The only problem is I feel my colitis acting up again. My mornings are becoming difficult again and I have bowel movement 3-4 time in 1 hour. I guess I will have to see what I do about this if it gets worse.
2young4this: I was also diagnosed with level 4 of bridging fibrosis I have no idea what stage I am at now but I will only find out when I have my next biopsy which I thing is in only 1.5-2 years, unless something dramatically changes in my health.
You are still young take care of your health and you still have time for children. Like Kim said God always has plans and you will see it will all work out.
Kim and Jody your numbers are also looking good keep it up.
Well everyone I must get back to work hope everyone is doing good and being positive.
Take care and have a good summer
Sara
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552713 tn?1215132846
Well, I am now through my TIPS revision.  They actually put the new TIPS (shunt) inside the older one.  The older one put in 2 years ago had started to curve and wasn't functioning like it was suppose to, so to straighten out the bloodflow, they placed the new one in on Monday.  I could tell Billirubin went way high as my eyes yellowed, skin tone changed.  I was also very sick for a couple of days.  Just glad it's over and hope this one will last until the transplant.  Last time they checked my billirubin it was 4.5 ..  Have a good day all, and my thoughts and prayers are with you..
Tender
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130737 tn?1214861465
My current numbers are: AST-59, ALT-63, Protein 8.7, Chloride 111, Bilirubin 1.5, Monocytes 12.5.  The rest of my numbers are in normal range.  My symptoms really havent changed... tired all of the time.  Headaches, hotflashes, swelling of feet, ankles, legs and hands/fingers.  
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Avatar universal
Hey Erin, I'm sure you'll be able to take the cellcept.  It is the same concept med as imuran and 6 mp.  Imuran and 6 mp are made by different manufacturers but my Dr. told me they are basically replica drugs.  Cellcept does the same thing as imuran and 6 mp, made by a different manufacturer, and it is made up differently.  My Dr. told me it is much newer then imuran and 6 mp, but it is really doing well on the market w/lupus and AIH.  Like I mentioned, ironically my step mom sent me an article about cellcept about 2 months ago, before I was on it.  She told me it was written up as a miracle drug in her lupus magazine.  Anyway, in the article it talked about cellcept and AIH and that is why she faxed it to me.  She wanted me to discuss it w/my Dr.  And it turned out to be the drug he put me on.  Look in to it!
Regarding reactions to imuran and 6mp.  Grew fairly tired all the time, eyes turned a hint of yellow and my bilirubin count went high.  Did the toxicity test and the levels were sky high.  I'm not sure about the symptoms you are having.  Does it seem like it is the lupus to you?  It is normal my Dr. told me every 6 months or so to do imuran and 6mp toxicity test.  So I'm sure that is why your Dr is doing it as well...Let us know!
And by the way on your prednisone reduction did you go from 7.5 to 5 to 2.5?  How did yours work?

Jody515...Your numbers are wonderful.  Depends what lab you have your tests at (each lab varies) but the lab I get my blood at the normal range for liver numbers are 5-40.  My other lab is 5-50.  So your numbers are great!  Mine are 22 and23.  Hope you enjoyed your day w/the grandchildren.  I look forward to that day.  I currently have 4 daughters and I adore them to death, but it is a lot of work....I think I'll enjoy the days when there kids can visit and then go home!!!!!!!!!!  ha-ha.  I have a long way to go.  My kids are 12,9 and 6(they are twins)..uuugghhhhh

2young4this.....Hey there.....I'm sure it must be tough wanting to have children but not being able to at this time...You hang in there, your time will come.  God always has a plan, right?
Curioius....Your liver was not improved, huh?  Are all your numbers back to normal?  Typically, the liver diseases w/AIH will tend to heal itself.  Did your Dr. give any indication as to what the problem is?

Have a Good One, Kim

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329518 tn?1219344568
Ok, just goes to show I have memory issues!

I think I was actually thinking of Celebrex as the non steriodal anti inflammatory.

what class of drugs does Cellcept belong too?
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329518 tn?1219344568
Hey Kim

I was wondering what type of reactions you had to the Imuran? My GI/rheumy just had me do the lab for 6 MMP to see if the Imuran is causing toxicity. I personally don't think this is the problem (as to why I'm still having joint pain, sore throat, chest discomfort) but now have to wait a week for the lab to come back. We already did this lab before I started taking it and I'm not feeling anything other than the exact same symptoms I had when it all started.

I looked into the Cellcept and I can't take it, unfortunately, since it's a non-steriodal anti inflammatory b/c it might affect my colitis. I kind of have the short end of the stick....can't take tylenol, ibuprofen, pepto, anything...ugh!

Erin
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130737 tn?1214861465
Sorry it has taken so long to get back to you.  I only get on the forum at work on my breaks.  Well I was disgnosed in 2004 at the age of 25.  I have not had children yet and really want to.   The doctors are telling me absolutely not while I am on Immuran.  I have had two biopsies of the liver.  My 1st biopsy was not good at all.  There are like four levels of damage and all but one test result came back  3 of 4.  I showed signs of bridging fibrosis.  I was put on Prednisone for 6 months and then on Immuran.  I have been on 75mg for 3 yrs now.  Last year I had another biopsy.  Although my labs showed much improvement, my actual liver did not.  So needless to say still no children.  They upped my dosage to 125mg of Immuran and 9mg of Entocort.  I do have other health problems but I dont know if they are connected to AIH.  Like I said before, I cant find anyone in my area that has this, but it helps to talk to others that do.  Thanks for listening.
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Avatar universal
HOpe this finds all okay, so sorry Erin about your inflammed hands & fingers.  That is terrible to have to endure so much.  Perhaps you could find out about that drug Kim was speaking of from your doctor & who knows, it may work for you.  Christine46 posted to us on June 25th or so, perhaps you could help him, he may be having the same issues as you? I couldn't help him because I really had never experienced anything of the nature you are.
I can't remember how fast the weaning down from prednisone went, but I do remember it was a slow wean down.
Okay, I finally remembered to find the recent blood work done at the end of May.  My ast was 20 & my alt was 11. I take it those were good? There isn't any marks beside them indicating they are high or anything as the glucose & chloride had.
Sara, I remember clearly the days when the children were getting out of school & trying to get them situated with a trustworthy source for watching.  I do miss those days very much. Heck, I even miss my own family days as a child & become quite nostalgic for those days sometimes. Have the g-children today ladies & they are hungry.  Later, Jo
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552713 tn?1215132846
Thank you the info on the 6mp Kim.  They've never tried me on anything but Prednisone wihich I'm on 7.5 and Imuran every day.  Since the last TIPS shunt I've also been on Laculose to keep the ammonia from effecting my memony, & brain from getting too much ammonia in it.  Urso was also prescribed to help with the itching and Lasix and Spirolactone to help with the swelling.  Forgive me for repeating myself if I do so.  Don't work too hard, and keep your chin up.  When I get better from the procedure I'm having later today, I'll let you know how it went.  With lots of thoughts and prayers!
Tender
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Avatar universal
Sorry you haven't heard from me in a while but the last couple of weeks have been crazy end of the school year etc..
Kim about weening down on prednisone when I was on 10 mg it took 1 month to get to 7.5 mg then 2 weeks to 5 mg and then after 1 month I was totally off prednisone.
During this time I was still on 75 mg of Imuran and only 4 month later I went down to 50 mg.
I am feeling good thank god my next blood tests are 13/7/08.
Kim great to see that your numbers are doing good I guess this new medication is really the best for you.
Erin: how are you doing? Are your hand still in pain and swollen?
Jody glad to see that you and your daughter are doing better.
Well take care ladies I really must get back to work.
Sara
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Avatar universal
Hey there,
6 MP is almost the exact replica drug as imuran.  They basically start everyone off on prednisone (the swell drug) and imuran.  But many Dr's use prednisone and 6 mp.  I was on prednisone and imuran for awhile.  Became very allergic to the imuran after about 6 months.  So they put me on 6 mp.  My Dr. told me they find people who are allergic to imuran do much better on 6mp.  but basically it is the same drug made by a different manufacturer.  Needless to say I was allergic to that as well.  Way to similar a drug.  So now I am on prednisone(7.5 mg) and cellcept.  The newest drug around.  But it has made me the best I've been in a year and a half.  My liver numbers went from 100 ast and 150 alt to 22 ast and 23 alt.  All in 3 weeks...I have had no problems w/it and finally my liver numbers are in the normal range.  

Have a good one....
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552713 tn?1215132846
I sure hope this finds you all doing well, or better.  If I may ask what kind of medicine is 6mp?  I've only been on Imuran and Prednisone (the swell pill ;) )  
Jody, as soon as they put the TIPS in, they put me on the liver transplant list.  Kidneys are still doing well, but spleen is taking a hit, my platelets are down and they won't replace them unless you go below 20,000.  I think mine are around 40,000.  Thank you for your really nice welcome and helping with your knowledge.
Erin, Hope you feel better very soon with your swelling, it sounds very uncomfortable.

Hugs to you all!!  :)  
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Avatar universal
Hi Erin,
sorry to hear about how you are feeling.  Glad that your Liver numbers are heading back where they should, but yes it does sound like the lupus is really acting up.  Well I wanted to tell you the medicine my Dr. moved me to is CELLCEPT.  If you remember I was allergic to imuran and 6 mp.  So he moved me to cellcept.  Now cellcept is only been around 5 years, but my Dr. told me it was grabbing Dr's attention left and right for how well it was doing on people.  Well I'm living proof.  My numbers went from 100 and 150 (ast/alt) to 20 and 22 in 3 weeks.  But anyway, I was nervous about the medication becuz nobody in the AIH community seems to really be on it.  I found 1 person whose husband has been on it for awhile.  But anyway, my step mom has lupus and gets a lupus magazine every month and in there was a big right up about my new drug cellcept.  Apparently, they are calling it the lupus cure drug.  I only have AIH and that is what my dr is using it on me for but in the lupus community they seem to be using it a lot now too and seeing great results...The article she sent me was fascinating and made me feel much better on it.  I've looked it up quite a bit on line as well, and there is a lot of info that connects cellcept and lupus.  Check it out and talk to your Dr. about it.  This way maybe they can take you off the imuran which seems to only be helping the AIH and entertain the idea of cellcept.  Now, it is a lot more expensive and depending on your insurance it may cost much more out of pocket.  Imuran and 6mp only cost me $15 for every prescription and cellcept costs me $30.  No big deal if it helps!!!!!

Check it out Erin and let me know!
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329518 tn?1219344568
Hi Everyone

Sorry not to have posted for a while. I went on a family vacation to Williamsburg, VA from June 27th thru July 4th and am home now. VA is beautiful, but I couldn't fully enjoy it b/c. I've been having the horrible esophagus discomfort again (it's gone today, but I had a nasty 3-4 day stretch of it). I've also had MAJOR inflammation in my hands. I always have some sore joints at any given time, but this was really bad. On the 1st my hands were so swollen....and we were at Busch Gardens, so, I was miserable and couldn't properly enjoy the day. Then the next 3 days my left index finger was SO inflammed at the lowest joint that I couldn't move it. I ended up taping it to my middle finger which helped a bunch. And of course, today it's fine as if it didn't happen. Plus, I've been dealing with the perputual sore throat for I don't even know how long.

The good news is that my last labs were promising. My AST dropped from 67 to 63 and my ALT from 61 to 44. So, the 100mg of Imuran is sending them in the right direction now.

I'm not scheduled to see my rheumy until July 10th, but I'm going to call Monday and beg to get in sooner. I really think he needs to try an additional med for my Lupus as obviously the Imuran is only controlling my AIH.

Oh, I've also been experiencing what I can only think to describe as muscle fatigue or weakness in my upper arms.

Kim: when I weaned off the Prednisone, once I was down to 10mg I took that for 2 wks then went to 5mg for 2 wks and then 2.5 for 10 days and then off.

Well, I hope everyone is doing OK and having a great holiday weekend. I'll let you know what happens at the rheumatologist.

Erin
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Avatar universal
I am so sorry I missed over your posting. I guess it was because I had so many e-mails when I returned & that I deleted so many junk e-mails that when the one that came thru telling me of your posting I deleted it by accident.
I was just thinking that perhaps because of the procedure that you have gone thru recently with the portal artery rupturing, don't you think that moved you up on the MELD score?  I know a little about it, went thru it with my brother last year & it seems that would move you up pretty high on the list.  I do recognize that the list changes wkly due your state of health along with the rest on the lists state of health.
I know about some of the other meds you are taking also to do with the lacutose & bilirudin or however it is pronounced.  I am so happy that they were able to do the TIPS thing also, they couldn't do it for my brother. Your kidneys are doing good I hope?
I just wanted to jump out here & apologize to Tenderheart for missing her posting.
Hope this finds all the rest doing great. Hugs to all, Jody
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552713 tn?1215132846
Hi Everyone,
I hope this finds you all doing well and enjoying your weekend.  Thank you for responding Kim, and your asking, I hope this helps.  

Kim, what state do you live in??  Grrr... know the feeling about the doctor.  Good luck with that.  Well, they found my AIH when I donated blood for the first time.  My levels were in the 600-800 range. They wrote me back and asked if I abused alcohol.  I never did drink so that wasn't the problem.  They then put me through a battery of tests, numerous doctors, and found what it was by the liver biopsy.  They first tried a high dose of prednisone (60 mg.) and they didn't seem to put my liver levels close to normal range, so they also added 100mg of Imuran.  That was the key.  I've been on both medications since this all started.  They've tried lowering the dose, since higher doses have so many side effects.  I am down now to 7.5 mg of prednisone and 100 mg of Imuran.  
    
It came to the point of me needing a transplant when the Hepatic/Portal Artery ruptured and lost a lot of blood.  They put a TIPS appliance in the 1st day and the next day they had to reposition it for better blood flow.  I was in ICU for a week afterwards, (this was 2 yrs ago.  Now on Monday, they will do another revision to get a better blood flow as I'm having trouble with fluid build up in my belly, legs, and feet.  They increased my Spirolactone and Lasix (both diuretics(?) ) and that helped me lose the fluids but the revision will help the most.  When they first put me on the liver transplant list they go by a MELD scoring system (scoring system for the US).  I think they go by so many points for the TIPS, your liver levels, and bilirubin levels.  I'm not really sure about the scoring system, but this is what I was told, someone else might know more about this than me.  I've heard the highest MELD score is 30, and I started out with a MELD score of 6 when they 1st put me on.  

Have a good weekend and know I'm keeping you in my thoughts and prayers!  
Tender
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Avatar universal
Hey everyone....Hope everyone is doing well...I am doing great.  For the first time in a year and a half I am on the mend, how could I be anything but good...

Tenderheart2...Thank you for the kind words about our group.  I think we are a pretty nice group of ladies as well...You mentioned you are on the transplant list.  Is your liver severely damaged at this point?  No point of recovery?  Was the liver damaged prior to them finding the disease or did the meds not work?  Let us know it sounds like a scary situation but you seem pretty up beat.  What should a normal MELD score be?

Take care everyone, Kim
P.S.  Sara and Erin....Don't forget to answer my question about the reduction of prednisone?  My Dr and I are not seeing eye to eye...  
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552713 tn?1215132846
Hi Everyone,
    Well, I've read the posts and you all are a very nice group of people.  I have had AIH for 13 years that we know of.  I was diagnosed in 1995.  I have been on the liver transplant list for two years.  My last MELD score was 18.  I am going in this Monday for a shunt revision on my TIPS, and this time I'm really scared.  I'm sure it will be fine.  I'll just be glad to have it completed and feeling somewhat better.  Take care my new friends and I'll be keeping you in my thoughts.  :D  
Virginia  
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Avatar universal
Hi All,
Just got home from a 4 day trip to Gatlingburg & NC.  Very nice but tiring.Haven't heard back from my blood work taken a wk ago but last month all was pretty good. I am going to have to get my blood work out & read what the alt & ast said.  Just not sure but know it is good or they would have told me so.  I feel like the 2.5 mg of prednisone is working okay though.
2young4 this I was diagnosed when I was 58 yrs old but had it since I was 53 yrs old.  My youngest daughter's niece on her husband's side is only 4 yrs old & was diagnosed with this one yr ago so both of my grandaughter's have it coming from both sides of the family. There was a not good article in the paper last wk & I will not go into details about a lady in her 40's who fell down while visiting relatives from dizziness, was one of the first girls to be apart of the female side of the sweet 16 college basketball back in the 70's.  She has this disease & her outlook is not good so there must be quite a few out there running around with this disease who aren't even aware of it.
Sara & Erin, hope this finds you all well & doing fine, talk later ladies.  Jody
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Avatar universal
Hi Everyone,
Well I received my labs and my AST is 22 and my ALT is 23.  So finally I am in the perfect zone!!!!  My Dr. has begun the weening process.  I'm going to 7.5 mg of prednisone immediately and my nurse is supposed to call me tomorrow and let me know how long to do that for.  When you guys were being weened how long did they keep you at each level?  For ex. I go to 7.5 today then typically is it 1 week, 2 weeks or 3 weeks before they drop you to 5 mg?  How was the process for all of you?

2Young4This....I  was diagnosed last year at 36 years old.  But someone that I work with has had it since she was 12.  So I think the ages ranges all over the map.  When were you diagnosed?  And how are you doing??

Talk to everyone soon.  Enjoy your weekend, Kim
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130737 tn?1214861465
Hi, I have been reading all of your comments on this forum.  I have a quick question... how old were all of you when you were diagnosed?  I am just curious.  I was diagnosed in 2004 with AIH.  Where I live nobody has it or doesnt talk about it.  It would be nice to talk to other poeple with it... Thank-you in advance for your time...
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Avatar universal
Well I am still feeling wonderful.  I go for labs on monday or tuesday and that will be a big tell all.  I have a ton of energy and I have been working out like a crazy person.  Either swimming or walking for an hour every day.  I believe it is finally paying off.  Clothes are finally starting to loosen up a bit and I am losing some weight in the face.  I used to wear my hair pulled back everyday.  But since my face ballooned up from the sterroids I never do.  Well I can say today I went to a Detroit Tigers Baseball Game and wore my hair back.  I didn't feel 100% but I felt better about it...Little nervous about tomorrow and my labs because I really feel the Lord has taken care of me the last couple of weeks, but it is always scary!

Christine, I do believe it is quite normal to feel exhausted when the prednisone is being reduced.  I think the body gets somewhat dependent on that for energy and all the sudden we wipe it away.  So just give your self some time.  Try working out a little during the day.  My Dr. told me that should help slightly and make sure you are taking a multi vitamin every day.

Jody, happy to hear the good news w/your daughter.  Least it sound like right now something she can control...

Well I think I told you all my dad was in Brazil for work over Father's Day and he was saying that the crime has gotten so bad he had to have a full time body guard w/him at all times.  When they see Americans and Europeons the people are constantly begging for money or stealing from you.  So sad.  My dad said it smells of pollution and it was really really sad.  There are currently over a million people in the city living in poverty.  Huts with or without roofs, no food, terrilbe drinking water.  I just really can't even imagine.  Its been on my mind a lot.  These days I am just so grateful.  Things seem tough in the U.S. right now but we really take things for granted and should feel so Blessed.  
Sara, I know you are in Israel but life as you know it seems quite good too.  Where you are sounds amazing.  We r so lucky!

Well take care everyone and keep your chins up!!!!!!!!!  Kim


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