AutoImmuneHepatitis-cont.

The first thread we were using is full, so please feel free to continue discussion here. There are more of us with AIH.  It is good to know that we are not alone.

[cuteus]

these members have been meeting in the bottom thread for AIH, and I suggested that they open a thread each wk or so, so that they can continue their exchange, since we have so many hep c threads, we can continue to use those and leave these for the AIH group.  THe hep b group should do the same, as this is a hepatitis forum, not just hep c.  So, let's just not use too many of the slots here for hep c, how bout that?

[SSM]

HI
thanks for starting the new thread maari .
I hope we can get all of the AIH people sharing here.GREAT idea Cuteus ! it is really a big help even if it is just knowing other good people have the same problems that I do. we all  have it so we just have to learn the best way to live with it. people on this forum seem very knowledgeable and some are so funny in  their comments sometimes. it cheers me up when I read them. we can all use a good laugh!
take care and everyone have a great day !
shirl

[GrandOak]

Not a problem.  I didn't realize I might be stepping on some toes or intruding unwelcomed upon some other group.  Sorry!

Since these insidious diseases share alot of commonality, which is probably why medhelp grouped them this way, which seems to model the medical catagorizations, information for one seems to often times be pertinant to the others.  But if the AIH group prefers to only include like-infected folks in their threads, as you seem to be indicating, then so be it.

[cuteus]

please go to  Insomnia meds - hep-c-alot 08/31/2006, it might explain things better.
be well

[GrandOak]

Could you please post reference to previous thread as I did not easily see it and as such I am not sure what information was exchanged there.

All I was going to say is that another person in our local support group is co-infected with AIH and HCV.  The real kicker is that 20 some years ago he contracted HCV when he recieved a liver transplant for his AIH problem.

From what I understand in talking with him, the tx for each are diametrically opposed to one another in that one attempts to suppress immune system and the other trys to boost it.  This results in treating one aggravating the other in his case.  So, he simply has lived with both now since his transplant as it appeared to have helped his AIH problem.

[Maari]

Thanks each of you for your comments and advice.  We really are newbes here.  I have never felt that any of you have stepped on toes or intruded.  If we get out of line let us know. You have some good information. Please ask anything, I have felt I could do the same.
Take care and thanks
Maari

[too_much]

Hi all.  Nice to know I'm not the only AIH here.  I was beginning to worry with all the posts about sticking to the topic of HCV... I was beginning to feel as though I shouldn't be here.  LOL, I'm sure it wasn't intended that way but you never know!

Anyhow, I'm curious to know what the average course of treatment is for AIH. I've been living with this for what seems like eons but was diagnosed just about two months ago.  I've been on prednisone and have now tapered down to 10 mg a day.  I'm going to see a Hepologist next month (BB).  Would it be unusual for prednisone to be stopped completely just to see if my symptoms return full force?  I ask because I was feeling pretty good while on the higher doses of prednisone but now that I'm tapering off the tiredness and the joint pain are creeping back in.  The gastro doc I've been seeing wants me totally off the pred for a week or so before I see the hepologist. Frankly I just can't hardly stand the thought of letting the symptoms take over again.  However, I don't like the side effects of the prednisone either so I'm hoping there is something else we can try.

[Maari]

Hi There are several of us with AIH, so welcome. I was dx in June 04, was started on pred and then Imuran.  The first time I tried to get off pred, I started getting tired again. So I was put back on pred and then more slowly weaned off.  I finished my last pred in Nov 04, since then have been on 100mg of Imuran. I had some side effects from pred and wanted off it. Such as high blood pressure, high glucose levels, night sweats, brain fog, bruising, weak bones, weight gain, tooth pain and bleeding gums, and neuropathy. After getting off pred most of the side effect went away. Oh yea! I still have the neuropathy, but not as severe. I did notice joint pain, pred is a pain reliever. In March 05 I was dx with arthritis and oesteopenia since having pain meds for that I feel good most of the time. I'm sure your Dr told you that we can get other auto immune ailments.

I'm am alittle concerned about your Dr wanting you off pred so quickly. My Gastro and liver specialist did not want me to have a rebound. My Drs were very conservative about pred weaning.  Things I have read all support going slow.

Are you taking any other meds besides pred? I was told that Imuran does the same thing as pred, only it takes longer and has to build up in the body.  I was told it takes 6 months to know if it is working. I am considered to be in remission, now see the Gastro every 6 months. I will probably need to be on meds for life. There are several other meds that AIH people are on.  Hopefully your hep will be up on those and which one would be best for you.

There are some days I almost forget I have AIH, other than the handfull of pills. Most days are good, have a few bad days.  I did not get back all my energy, but back to 90%. I can live with my new normal.
Maari

[too_much]

Hello, and thanks for the welcome.  I have to hit the sack pretty soon but I was so excited to see that someone had actuall responded to me that sleep will just have to wait a few minutes...  So, I get the feeling that my GI wants the hepatologist to confirm his diagnosis and that's why he is taking me down off the pred so quickly.  I was 40 mg for two weeks, then 30mg for two weeks, 20mg for two weeks and am now on 10 mg for six weeks.  He says he wants the "specialist" to decide what medication I should be on.  Meanwhile I'm in pain...

I have seen a rhuematologist for several years but he was puzzled by me.  Incredible joint pain with the swelling and such but my labs always came back only slightly elevated, and x-rays showed no damage to my joints at all.  An MRI done on my knee for a miniscal tear showed no evidence at all as to why I had been having such a hard time walking due to the pain (aside from the tear but the pain had gone on way before that).  I truly believe he thought I was faking it for the meds... he diagnosed me with "Palandromic Arthritis" and pretty much blew me off.  Come to find out rhuematoid arthritis like pain and swelling in the joints is also a symptom of AIH.  I feel so validated!  Finally someone took me seriously!  My family doc and the rheumatologist had never really paid much attention when I spoke and just wrote everything off as STRESS, LOL. And my family and friends always acted like my pain wasn't real too.  I swear I was about to lose my mind before my new family doc took a look at my file.

I don't mean to make it sound as though I don't like the GI when questioning his medication choices, I just don't know really what's normal.

I understand your battle with the prednisone side effects. When I was on 40 mg I felt like I was on speed and was going to pass out all the time and my eyes felt like they were going to pop out of my head.  I would take it around 6 am and around 2 pm I was my heart would start to race and I'd feel like that the rest of the day.  That has diminished a bit with the lower doses but is still there.  I have also put on about 10 pounds, which has me upset as I needed to lose weight before. I'd like to be off the prednisone asap but not without something else to take over it's duties. I'm glad to hear you've found something that works for you, hopefully I will too.

Well I can't keep my eyes open a minute longer so I must sign off for now.  I look forward to chatting with you and the others on this thread in the days to come.  Thanks again for the nice welcome.

[SSM]

hi
I don't think you're stepping on any toes.  it's great to meet everyone. I think people just talk on any thread if they find something interesting. I scroll up and down all the time .
Hopefully a lot of people will come and chat.  no matter what hepatis it is.  my Dr. said I had hepatitis A at one time because I still have antibodies so I am also interested in hearing people talk about that. so far I haven't heard anyone mention it though.
take care  and please keep visiting here.  nice to meet you !!!
shirl

[SSM]

hi Scott
yea-- Alts over the 1500 mark. I actually was started on prednisone before the biopsy as he was that positive I had AIH.
Some people seem to have more problems than i do and maybe it is because i don't take other meds. at least not very often so one med doesn't work against another.  
You seem to have a good outlook with all that you have been through. I hope things keep getting better for you.
My Dr' told me if i hadn't gone to him when i did I would have been looking for a transplant within two years. !!!  I should have gone long before --- I kept blaming it on getting older as far as the tiredness went . awhile back i read something that said Old Age is not a disease. it has no symptons. sometimes older people get diseases and the diseases DO have symptons !!!! I should have read that earlier !  ha!!  well -- I'm doing fine. I feel pretty good almost all the time except for tired  and I'm down to 2.5 pred now. my numbers are all in the normal range  so I cannot complain.
it's so great to talk with others that know something about this.
take care --- happy days----
shirl

[SSM]

hi
welocome to the forum. it's so good to hear of others with AIH . it is quite rare so you never seem to run into anyone with it .
I was diagonosed with AIH  last october. my hepatologist put me on 40 ml of prednisone. I had TONS of energy -- I cleaned my entire house and started cooking ( which i don;t like to do) and I couldn't stop--- new recipes--- two or three desserts a day -- just so i could cook !  CRAZY !  I also gained 34 pounds since then. a lot of fluid . ( not all is fluid -- some if it is desserts i.m sure!) after several months he added 50 ml of azathioprine ( imuran)  as my numbers were comiing down. in Feb my numbers went up a little so he kept me on 20 ml of pred until they were in the normal range again. that took three months. it was a stresful time for me and i think that is why they went up. once in the normal range again he started lowering pred until i am now taking 2.5 ml a day.  from what i have read and what i have been told you can very sick if you go off too fast.  apparently the adrendal glands stop producing cordisol ( sp) when you take pred for any length of time. if you go off pred quickly the adrenal glands may not have time to start producing the hormone cortisol again and you and can get seriously ill. I hope I am correct in telling you this. this is how i understand it.   when I was diagonosed my alt and ast were in the 1500,s  my skin itched bad - my urine was a dark red orange. I was so tired i couldn't stand it.  but i have a great Dr. who told me if i wouldn't try to treat myself he would get me feeling good again and it seems to be working. he also told me it could take up to one to two years !  he said it is a very slow process. not curable but is treatable.you have to have patience. i hated the pred because of the weihgt gain  but you do what you have to do . it's not been that bad for me . i keep a positive attitude and don't let it get me down. being on the forum helps a lot. so many nice people and so many are knowledgeable. some have a great sense of humor and i love that.  
GOod luck to you  and stay in touch.  
have a good day --
shirl

[cuteus]

now you got my attention! joint aches and rheumy type of symptoms is a sign of AIH?  Do you have any ideas what specifically might cause that?  Even when there is no advanced liver damage, it seems that anything that involves the liver can cause these symptoms?  The reason I am now interested in this conversation is that it was a rheumatologist who sent me for a hepatic profile and found hep c. My liver was not too damaged at stage one.  So, what is at work with these liver related diseases, when the liver is not damaged severely, showing up as joint aches?  There are new tests that rheumatologists are using to detect Rheumatoid arthritis, and other autoimmune conditions, something new and more definite in the HLA gene and other antigens (got the tests in the car right now) and they all came back normal range.  It looks like AIH will also have what is termed extrahepatic manifestations, even when the liver is not severely damaged? I should have read that bottom read more carefully.

[Maari]

I know how you feel. The first time I heard from someone who also had AIH.  I am not the only one. There is a very good all AIH site its autoimmunehepatitis.co.uk  There are people who have had AIH for 20+ years. There is lots of good information.

My rheum also said some of the pain was from AIH.  I guess that makes sense, it is an overactive immune system that is causing the problems.  Why would it only affect the liver? Many of my bloodtests show a high CRP, when I looked this up it is either a warning of heart attack risk or inflamation (inflammation).  I asked the dr about that and he said it was inflamation (inflammation). And of course the ANA titre which is also an indication of autoimmune diseases. I was tested for Lupus, have some but all the symptoms. I am glad that you found a new Dr that is not wrtiting stuff off to stress.

Keep informed and ask questions.  Most Doctor are glad when you take an active role in your health care. I keep a journal of symptoms and take it with me to appointments.  Then when a dr asked did you have this? and when? I can answer accurately. I started when I had the brain fog, thought I was losing my mind. So glad that went away.

Take care
M

  

[SSM]

hi scott
sorry I've been dragging my heels.
I have been tired this week but that happened the last time my prednisone was lowered too so it is most likely because of that.
yesterday I met two friends and we went to a river to do some watercoloring.  it is a  small river -- not like the mighty mississippi. you could throw a stone across in some areas. where we were ;there was a tiny beach where we could set up . a couple of little islands with big rocks and lots of different kinds of trees. even a fisherman !!!!!!!!!  how cool is that ?  we also discovered a swinging bridge that we walked across. later a man came down to see what we were doing and said the bridge  is part of the" long trail" for hiking. anyway -- it was a great day and now the girls want to go back again  so we have to plan another outing.
when i got home I fell asleep in my chair !  i NEVER do that. then went to bed at 9:30 and slept until 8:00   must have been all that fresh air !   ha !
my liver biopsy under final pathological diagonosis :
1. chronic hepatitus (hepatitis), consistent with auto immune hepatitus (hepatitis).
severely active ( grade 4 out of 4)
Bridging fibrocis and parenchymal collapse. see comment:
Comment:
there is portal and acinar inflamation (inflammation) with significant interface hepatitis and hepatocellular damage. plasma cells are prominent,. the native bile ducts are intact. a trichrome stain demonstrates bridging fibrosis with associated parenchymal collapse, which may be a reversible process. iron stain is negative.
thats about it.  at first i thought I was a grade 4 liver. apparently i am a grade 3.  the 4 out of 4 is the severity of the action .
anyway --- it is what it is --- it's mine- I bought it so i have to deal with it. i choose not to let it get me down. if it gets me down-- it wins.   if it doesn't get me down -- I win !!!! and i like to win !!!!!!!!!!!! :-)
most of the time i feel o.k anyway -- tired mostly.
I don't know how you manage both HCV and AIH.  do you aim to keep somewhere in the middle ? it must be difficult to manage your meds ? i can't imagine.  
hoping this finds you enjoying a good day !
best to you ---
shirl

[SSM]

Hey Lynn--
where are you?
i remember you were going to see your Dr. on thursday .   how did that go ??
also how is your back? hopefully it is feeling good again ?
tomorrow I am off to the city -- have some errands to do . and also visit a friend. she is going to show me how to miter a corner for my quilts. I made all these quilts and don;'t know how to put the binding on !  
take care and i hope you're feeling super !!!!!!!!!
shirl

[allikins]

Hey All! Having a great week for a change. Actully had some energy to burn! Whoo hooo!! Anyway, I too have the joint pain, should I see a different doctor for that as well? I also need to make sure I see a hepatoligist too, I was advised. What's the difference in a liver specialist and a hepatoligist? I see a liver specialist now.  I also have a neurological disorder called trigeminal neuralgia, which is an extremely painful affliction to the face. I take oxycotin, and neurontin for the pain for it, and I think it keeps me from feeling like I'm on speed from the pred.( Thank God!!) What other crud does this do to you? I've read diabetes, lupus, arthritis. Is there anything else?? I'm one of those saps if I know about it I seem to get it so maybe I need not know, lol!! Just kidding! I hope everyone is granted some good days like I have been, and God is smiling down on you all!! I will be gone next week to Oregon for a conference on the TN. Is there ever conferences on AIH? Take care all!!

[Maari]

Hi Glad you are feeling good. Joint pain is part of AIH, I went to a rheum when my joints started swelling and were very painful.  My hands ached and my knees, could only take one stairstep at a time.  The pain made me miserable, and I wanted to know if I could take something other than tylenol. When I broke a rib because of pred, I was given loratab, took the pain away but made me loopy. I thought a liver spec and a hepatologist were the same thing, maybe someone else has a better answer for that. To the list of other things are several eye conditions, cataracts and glaucoma, and osteoporosis and high blood pressure, all thanks to pred. Hope you have a good time at your TN conference.  There has not been an AIH conference in the US yet.  There is one every year in the UK, wish it were closer, the folks over there are just bubbly afterwards. Matt the guy who started the support group in the UK is going to try to help get one started for us here.

Take care and have a good conference
M

[SSM]

HI
where do you learn all that stuff Maari ? abou the conference and support group ?
have any of you checked out the hepatitus (hepatitis) forum at healingwell.com? it also has a few Fellow AIHers. ( myself included).
when I went to the orthomologist recently he said I have extreamly dry eyes. he plugged the tear ducts in one eye to keep the moisture in. I have to use drops quite often. he also said I have mild cataracts. nothing to worry about. I asked him if prednisone could have caused it and he said possibly but not to worry as they are very mild. I have a lot of trouble with my right eye. the dryness thing.
I had quite a lot of aching all over last week when I had my pred lowered to 2.5. it happened the last time it was lowered too but it seems better now. I have some osteoarthritis anyway but not too bad.
Maari where do you learn about the AIH conference? and about Matt starting an AIH support group  in the states ? when is the conference in England? not that I will be going -- just curious of what the people that do go might have to say .  
today I met a friend and we went to the river to watercolor again. then lunch out at a little diner where they make homecooked food. .  SUPER DAY! I am tired tonight. i think it's all that fresh air and sunshine --- my system can't handle it !  ha !
take care -- i'm ready for a cup of tea!
shirl

[Maari]

Hi Shirl

The conference is September 24 in Birmingham N.E.C. I read all the posts on that site.  Matt has talked with us USA folks in the forum and is very supportive.  It is harder here because we are spread out across the country.  The frapper map is neat because it shows by markers where people are located all around the world.
Every year those who have attended are anxious to go to the next one.  I think they get good speakers and  have a good time getting together. To be honest it makes me a little envious.  Oh well.  Someone here has to be willing to sponsor it and get plans going.
Have not checked out the healingwell site yet but I will.

Take care
M

[allikins]

Thanks fot the info. I do know that when I return from the TN conference I have new hope,a renewed feeling of not being alone in this, and a new outlook on that disorder. I seem to learn more each time I go too. You think you've heard all and know all until you go. I sure hope Matt can get one started here in the states. We'll have to make sure it's someplace warm and by the ocean when he does!! lol It makes a difference being someplace like that. There is just something soothing about the ocean. I think I enjoy the connection you feel when you meet others in your shoes the most though. if there is any way I can help get one going let me know!! Take care!!

Alice

[Maari]

Hi Alice
Hope your TN conference is a positive experience.  Do you live in Illinois?  I live in Michigan about 90 miles from Chicago. I have not asked my doc about the number of AIH people they treat.  I know because of privacy issues they can not give out names.  That seems to make it harder to find out it people would be interested in a conference. I know it was great to meet another AIH person, we met half way and had lunch.  It was like we have known each other for a long time. We found out about each other because of the UK site.  AIH is quite a bond.
We hope to get together once a month.  These forums are good because it is so good to not feel alone.
Have a great trip
M

[SSM]

Hi alice
I also hope you have a great time a t your conference. when are you going?
I am in upper state vermont -- a country town outside of Burlington.  I.m wondering where you are from also ?  I think it would be interesting to see where everyone is from. it seems like we are all over the map ! :-)
warm next to the ocean --- sounds great to me too !
take care  and stay positive !
shirl

[allikins]

I'm in Illinois about 60 miles south of Chicago. I'm leaving tomorrow for the conference. Maari, maybe I could meet you sometime when I make my trip to Michigan to see my best friend.I'll let you know when that is. See ya all in a week!
Alice

[michelle13131]

I have posted here, but it has been a month or so.
Anyways, to catch you all up. My daughter who is 7 was diagnosed with autoimmune hepatitis  nin May of this yr.
She is only on Imuran the generic form. She was on Prednisone for about a month though
SHe is currently having a lot of back pain . Has been complaining for about 5 days on and off now. She sees her hep tomorrow in St Louis.
I seen a form from medical alert from her doctor and it said she was at medical risk. Does that mean for other complications or exacltly what i wonder.
She had a biopsy done about 3 months ago and it did show signs of scar tissue and inflamation (inflammation).


shelley

[Maari]

Hi Shelley
Sorry to hear about your daughters pain. I had some back pain earlier on in my AIH.  I was dx in June 04.  I was on a combo of pred and Imuran for 6 months and since then have been on Imuran alone.  Its good you have a dr appointment, hope they can give you some answers. Some joint pain goes along with AIH, I also have arthritis and osteopenia.  Its a bummer but often we get other auto immune stuff.  I take pain meds and it helps.

Medical risk - that could mean a number of things.  Anyone who takes a drug like imuran will have a suppressed immune system.  That is what that drug does, it makes our immune system turn down and thus brings the AIH under control.  This does make us at risk for infections, I wipe down cart handles with purel and try to stay away from sick folks.  I have so far gotten really sick just once, need antibiotics.

All my drs, GP, Gastro and Liver Spec have said the liver can heal itself somewhat. So there is hope that the scarring will get better.  As far as the AIH, I was told it can go into remission, but flare ups are likely. But it is controllable.

Tske care
M

[Maari]

Hi Shelley
I was just at the autoimmunehepatitis.co.uk  site  If you have not been there please do.  There are posts about children with AIH and back pain.  There are a number of parents with AIH children.  You are not alone.
Maari

[Maari]

Hi Alice  Glad to hear that the conference was a great experience.  Always good to get helpful information. What a treat to get a break from everyday life.  Hope your labs bring good news. Keep that positive attitude. I felt like things were getting better when I got to start weaning off pred. Was sooo happy when the side effects went away.
If you feel like sharing, I'd be interested. What are things you can do to help with the pain?
Take care M

[allikins]

Hi all!! The conference was great!! Was able to sit with and ask questions with doctors about different options for my trigeminal neuralgia disorder. Learned quite a bit about ways to control the pain naturally and lots of other things!! I won't bore you with any more of the details, lol, sorry. I am just really pumped from the break I got!! The food was awesome, as was the scenery. The lack of stress from the kids was a blessing,I felt better than I have in months!!! I get to go for blood work tomorrow, keep me in your prayers. If they're normal, I get to start tapering off the pred. I hate the stuff, makes me look like a puffalump!!! At least my face does, lol. I hope all are doing well!! I did find out that my doctor is a hepatoligist as well as a specialist in liver transplantation. I pray to God that I will never need her for that, but it's good to know that she's one of the best of a team of docs! Is there anyone in this forum from the Chicago area? Maybe we could get a support group going around here. Just a thought. Well I'm off to do other things, take care & I pray that all of you who are batteling this disease will get healing, and get the comfort you need until it comes.  God's Grace be with you!! Alice

[allikins]

Hi! Well I learned about lots of differrent supplements, such as Magnesium, Alpha lipoic acid, Ginko, fish oil, all help with different aspects of the pain, and stress of this. the fish oil, and magnesium both help with replacing the meylan that is being destroyed by the blood vessel laying on the nerve in the brain. Ginko helps with the stress and depresssion that severely effect how you feel. A stressful day can put me in pain for days. They do use anti-depressants for depression as well as an "off label" use for the pain. I learned that I can go to the emergency room for treatment when the pain is really bad and daily meds aren't working. Before, I always was tempted to go but figured there would'nt be much they would be able to do for me because they wouldn't know what it is. Not to mention, I would'nt let the neurologists in this town near me with a ten foot pole  But now, I know to get an "ER plan" from my doctor and a letter stating what needs to be done when I come in. That was a big help. You really feel desperate when this pain gets bad. I am one of the worst cases there are of this. My doctor says I am the worst case he has, and at the conference no one else had it as bad. there were 400 others there with it. At least when I do things, I do it all the way, lol. I took in so much information it's going to take weeks to finally ingest all of it. I have all of sorts of information to still read. They give us almost all of the conference talks in a binder to go over when we get home, for the ones we weren't able to attend. We di dhave a lot of fun too. They toook us for a river cruise in a 3 tier yacht, with horderves, and the gala dinner was excellent.
How are you feeling? How long have you had this? Sometimes it really scares me, especially the thought of a transplant, and I'm no stranger to surgery either. I've had 13 surgeries over the course of my life. Also with the trigeminal my last chance at some relief is brain surgery, when there are no other meds left for me to take, they will do what is called motor cortex stimulation. When my brain gets wrapped around the possiablility of having to have one or both of the 2 surgeries I get... well I'm not sure how I get, not depressed, but overwhelmed I guess. Well tell me about you. I guess I've taken up enough space for one night, lol. Take care and Have a Blessed night. A

[Maari]

Hi Alice  It sounds like you got lots of very helpful information.  The "ER plan" great idea. You certainly have a lot of stuff to deal with. It was interesting to me when you talked about meylan... I have a handicapped daughter she has 18q- syndrome. One of her many diabilities is not enough meylan around the nerve sheaths in the brain. She is 27 but is very small, looks like an 8 year old, she has been tested at about 6 to 12 months in cognitive levels. She has both mental and physical problems.  Through everything she is a happy child and you know thats more than some people can say.  She is legally blind, hearing impared, and is non verbal and is totally dependent on us. Sorry I did not mean to get off track.

When you talk of the pain, I can only think of the pain I had with AIH before dx. And that was small compared to what you deal with. I was dx in June 04.  Have been on pred and Imuran, now on imuran only.  I also have arthritis and osteopenia.  Was so glad when the rheum put me on prevacidNapraxaPac. Tylenol did nothing for me. I broke a rib while on pred, was given loratab. So I knew there was something better, if my liver could handle it. I was glad to get off predn and those side effects. The only one that did not go away was the neuropathy, but at least it is not as intense. The brain fog made me think I was losing my mind. I still have not found some stuff I put away in 04, I don't have a clue what I did with it. It also makes a good excuse," gee I just don't remember ". It was a relief when the docs finally said, we know what you have. Now I feel pretty good, have some bad days, but so much better.  I don't think I'll get all my energy back, so if I do too much, my body reminds me.  Now when I need a nap I take it.

I'm 53, married. Have 3 children, 29, 27 and 25.  Two daughters at home.  Our oldest is doing a VISTA job, does not even get paid mimimun wage, they want them to live below the poverty line. She loves the job, great experience, but so needs to find a real job. Our son lives in Wisconsin, works as a DBA.  I take care of Michelle, the state pays me some to do that.  Have not worked in the real world since the kids were born.  Life does not always work out as planned. Never imagined that I would still be changing diapers. In 04 I was too weak to pick her up, so like I said things are better. I like to learn, so I learn all I can about AIH. It is good to know that I'm not the only one. Would like to meet you some time.

I can understand overwhelmed.  In my life, I have more than once said I can't handle this, but you know God has given me what I need.  Some times, I feel sorry for myself, have a good cry and then look around.  Things could be worse, my problems are not as many as others.  I am a stronger person because of this and I've learned so much about medical things.

Take care and I'll keep you in my prayers
M

[allikins]

I used to work with disabled adults, so I know what you do every day, and how burnt out you can get. God I beleve gives no more than we can handle. I just wish HE DIDN'T TRUST US WITH SO MUCH SOMETIMES, LOL. You are one of His angels entrusted to do a very important job. I always wanted to work with the children but the job opportunity never opened up. Lifting the adults all the time took a toll on my body and especially my neck. Wound up with 2 herniated discs and had to have surgery to replace them. I worked with others less severly disabled, and in group homes until I met my hubby.
I am married, have 4 kids, 23, 19, 17, & 17. Not twins, we are a combined family, he has 2 and so do I. I have 2 boys, him a boy and girl. Three of the 4 are bi-polar, lucky me lol. I have raised his kids since they were 6 and 8, so I consider them mine too. I just got to get more kids the easy way, lol. No labor. My daughter graduates this spring, and then one left to go the next year. Even though they are both 17, one was born before the cut off in july and the other in august after it. He really hates that!
The B-12 & 6 are very good at preventing the meylan from being destroyed further, but to get the most from it, you need the liquid form or injectable. The pill loses something they said in digestion. I started my regeimn of the supplemets today. I'm doing the liquid form. You may want to ask her doctor if it could help her.
I met my husband 11 years ago, and he runs his own business and at that point became a full time stay at home mom, and do the paperwork and bookwork for the business. Makes his life a little easier and kept me from being too bored when the kids were in school. I'm an A type personality, always have to have a full plate and then some,, lol. I was your typical overachiever room mom and PTA board member, not to mention the various things I did at church. helped with youth group, served on women's guild, was an elder, served on church board, and helped make new banners to hang in the church, and was a Sunday school teacher. Since getting the TN, I had to curb my activities. Now we belong to new non-denominationl church and I help in the sunday school classes on a rotating basis. Quite a step down from what I'm used to. AIH has really slowed me down. Now I have someone to help me instead of me always being the one to do the helping. I too find when I do too much, I know it, and at this point it doesn't take much. Did it take a year or better to get yours in control? Forgive me if i ask a question more than once, that would be the meds fault, makes me really forgetful. I don't like being so sedate, but I'll deal with it. I now fill time with scrapbooking, I love it!! I made several books for my son who graduated last june. One for the trips we've took, one for baby and younger years, one for the sports he's palyed, and one for all family and animals. He didn't know I was making them for him and he loved them. I still have a few pages to finish for him an them I will be doing the same for my daughter. I'm excited to start hers, it will be so pretty!!
Who knows, after this goes into remission, maybe I will help get a conference going here in the states for AIH, after my kids have both graduated and I have time on my hands once agin. We'll just have to see where the Lord leads me!  With that I bid you Good night!! Sweet sleeep!! Allikins

[Maari]

Hi Alice  Wow!  You have your hands full. Type A huh?  Slowing down has got to be hard. It is different when you are the one to need rather than give help.  Sometimes I think that teaches humility. I have learned that sometimes it is a gift to let others help you. I was a bit stubborn when Michelle was a baby, I thought no one is here to help me so I need to do this myself. Took awhile before we signed up for a trained sitter, crippled childrens and family services. I sure learned lots about the system.  Even got bold one year we did not sign the IEP papers, because the schools labled her Severly Mentally Imparied, when she is Severly Multiply Impaired. They told us there were  no other SXI children, so Michelle was the 1st.  Then all of a sudden there were 10 enough for a classroom.

It took about a year for me to get into remmission.  I started to feel better slowly, like I didn't need a nap today.  Then I could walk up steps normally and was not tired. It took about 6 months for my arthritis to be dx and then treated.  Still had some joint pain, but all the drs say there is some AIH pain. I have always had a good memory, so it bummed me when I could not remember things.  I was a total blank. This summer my husbands' company rented buses and we went to Shedd Aquarium, we watched Finding Nemo on the way. I said that was a cute movies, Steve says to me you have seen it before, last summer don't you remember.  TOTAL BLANK.  I'm so glad my memory is back, came back 1 month and 15 days after being off predn.

I have never done any scrap booking.  I sew, quilt and do counted cross stitch. That is a nice gift for your children. I am on the board for an outreach ministry. Sitting on the board with a number of Pastors is interesting. Never realized how much work writing bylwas was.  We make curtains for needy families. It is amazing what a change curtains make.  Most are single Mom families. We are now starting to try to teach some skills that a number of these women are missing. I am a volunteer, we have one paid director. This comunity has had some many different programs and money thrown at it and they have not worked, so this is an experiment at doing things differently.  If it is sucessful it will be used a model other places. Keeps me busy, you never know how many clients will show up for things. I am learning alot. I started to learned to say NO. Can only do so much.
Hope you have a good day and take care
M

[allikins]

I too have arthritis in my hands now, that was one of the first symptoms I had before they diagnosed me. The pred seems to help it for now. I know when I was coming off it the pain returned. Not looking forward to that lol.
I have my good days and my bad, depends on how much I overdo it now. I have learned humility, that's for sure. Took me a bit, but I have.
That's really a neat idea for helping people! I love to sew! I used to make my daughter's dresses for Christmas, and Easter. I went to make her prom dress last year but made a mistake cutting the pattern out and didn't have enough material to replace the peice I messed up. I was using material I had had from a few years before for another dress that she wound up not wanting me to make after all. So this yea I hope to feel up to making her senior yeaar prom dress. Maybe if I start it now I'll get it finished lol!!
Well, my hubby and I won a free trip to the Bahamas the last time we were there, and we are leaving tomorrow morning early for it. Just the two of us! I'm very excited to have some quality alone time with him and the rest and relaxation I will get while there! We will be gone for 5 glorious days, no phone no kids, no work, no customers etc.... Wooohoo! lol Unlike the conference, I will get some rest this trip. You take care and I'll be in touch when I return! Have a blessed week!! (and pray we don't get a hurricaine while there, what was I thinking when I booked this trip, middle of hurricaine season, lol) Just kidding I know God will watch over us while there! Allikins

[SSM]

HOORAY !!!  I am off prednisone ! the nurse just called with my lab results. the alt and ast had actually gone down a little.now I will be taking 50 ml of azathioprine only  and I believe the plan is to reduce that until my numbers start to climb and at that time he will decide on a dosage and keep me there.  I am sooooooooo happy to be off prednisone. now maybe the weight will come off. the bloating is already going away especially in my face where I notice it the most. I actually have an appt to see my hepatologist on the 25th of oct before we leave here for the winter.
Did you find the hand sanitizer that I told you about Maari?  it is called NEXCARE and is 61% alcohol in case anyone else wants to know .  PURELL is only 40 %. I got mine at Brooks pharmacy. my hepatologist says sanitizers are to kill bacteria and it is viruses that we have to be careful of and it doesn't work on viruses. he claims to wash your hands with soap often, for two mins at a time as it is the friction that kills the viruses. also no hugs and handshakes as that is how you catch a virus . my GP thinks the sanitizer helps some so I will do it anyway. she said get one at least 60% alcohol.
I was also told I need to get a flu shot so will call to see if my GP is giving them yet.
a HAPPY  day for me !!  there is a light at the end of the tunnel !  :-)
that bahamas trip sound fantastic. will be waiting to hear about that  !!!  :-)
hope everyone else is enjoying the day as well.
shirl

[cuteus]

I have to tell you that you live in one of the most beautiful states in the northeast! I lived in northern VT for over4 yrs, but because I am a tropical creature, I could not deal with 40 below weather anymore! I lived in Norton, Lyndonville and St Johnsbury. Never went skiing, though! This is where I learned to never again take Aunt Jemima if I could help it! I have stuck by VT maple syrup since then!
congrats on kicking the pred!

[SSM]

hi
yes-- this is a gorgeous state and about to get even prettier with the trees starting to turn now.  I also lived in Lyndonville. my husband ran the food service at Lyndon  state for awhile. it was called saga food then --now it's sedexho marriott. and he is retired and works at a museum in security !!  I don't do winter sports either but I love to watch them . i am orginally from boothbay Harbor Maine. another gorgeous place!
I have to apologize.  I said purell was 40 % alcohol and indeed it does say that on one of my small bottles. however while shopping yesterday I saw a bottle just laying with some other stuff where someone obviously had sat it down and I picked it up and read 62 % alcohol  so I bought it. i think it was laying there for me to see and read !!!!!!!!!!!!! ha ha !! well-- it worked and I read it and bought it !! sorry about my goof up.
I just had a cat scan done yesterday to check my lymph nodes. they were really large and some were  out of spec last Fall when I was diagonosed with AIH. they thought I might have lymphoma so had to see an oncologist and he didn't think so. anyway -- I requested a cat as I want to know  where that stands.I feel good and haven't lost any weight that's for sure so I think I am fine.
I am so happy to be off prednisone. I never had a lot of problems with it but I did bloat and gain weight so I want to lose that. the bloating is going away.
well-- take care -- it is sun shiny here today with a forcast of rain for the next four days ! everyone have a great day and I will too !
shirl

[allikins]

Hi All!! Glad to hear someone is getting off pred.!!! I'm waiting to hear if I can start tapering down. the Bahamas trip was just what we needed!! The weather was great most of the days, had one day with rain while we were snorkling, so it didn't matter that it did. Then it rained the day we left. We had a wonderful relaxing time though. Slept till noon everyday and enjoyed the entertainment till late at night! The place we go to is all inclusive, and they have nightly caberet shows with different themes each night, and then a band plays afterwards. They treated us like royalty every day. Called each day to make sure everything was up to snuff, and sent us a bottle of wine and a fruit plate right after we arrived. NO I did not drink any, but I did bring it home so that when I can enjoy a glass it will be here to remind me of the good time we had. Did some shopping for gifts for my man children and friends, and me too of course, lol. I saw the most beautiful blue diamonds, told my hubby that he was gonna have to buy me one some day!! That is when the price of them come down. Right now I guess they are not too common yet, kind of like the pink ones when they first started selling them. The jeweler told me that the price would come down eventually. Right now for a small one, like a quarter carat is like 2 grand and up!! So I will wait, lol. I am a jewelry nut! I love saphires, and tanzanite, and diamonds of course lol.  But since my hubby just bought me the 3 stone diamond necklace, you know the past present and future one, I let him off the hook for the blue diamonds, lol, for now.  We saw Hulk Hogans house one the ocean, and a few other famous peoples houses too, but I can't remember who's lol. I only had pain one time while we were there and wasn't tired and wore out either. I tll ya you take stress out of the picture of this illnesss and it makes such a diffeence. Even with my TN, I felt no pain. It was nice to have a remission from that pain!!! It's the worst! Well have a great day all!

[Sossa]

Hi!

This is my first time on this or any other forum. I'm so happy you've started this separate group...I was getting a little discouraged by the overwhelming HepC presence.  Especially with respect to tx, I wasn't finding what I needed.  Everyone seems so nice and supportive! After 3 years of so-called steatohep, was just diagnosed yesterday with AIH, based on ANA level and many symptoms.  Next step, biopsy to confirm, followed by simultaneous start on pred and Imuran. I'm interested in all the many symptoms everyone seems to have...I understand that we're dealing with both side effects of meds AND other autoimmune diseases that may come with AIH. Sometimes hard to tell what's what!  

I'm wondering how others deal with work...I'm struggling with that right now. For the last few months, I've been mostly working from home (lucky to be able to do that).
S

[SSM]

hi
so happy to meet you. I'm glad we all found this forum. it is very user-friendly. many people seem to have a lot of knowledge. some of the Hep C symptons are similar but they have different treatment than AIH.
here is my story.  I am 67 years old. I have had episodes of " flu" for several years and very tired at times also, but passed it off as flu and age.  in hind  site I think it might have been AIH. My hepatologist ( I will refer to him as DR.F) says I have had it for a long time -- probably years but he doesn't know how many years. I believe his interest is mainly getting me feeling well as opposed to how I got it. last fall I started getting extreamly tired -- so much so that at times I wanted to pull my car over to the side of the road and sleep. that alone should have sent me to the Dr but it didn't. then my arms started itching really bad --REALLY bad. I found rubbing baby powder on helped. also my lower arms started losing muscle and skin was hanging. looked like a very old arm !!!!!!!!!  all wrinkled. ( astrophy ) I still didn't go to the Dr.  I always have had itchy skin even tho not so bad as this and I thought the astrophy was ageing (aging). what FINALLY sent me to the Dr was urine that turned a dark orange -red.  I thought it was blood. my dr checked and said it was not blood and she made an app for me to see Dr F.. he wanted a cat scan but he told her from the lab report of alt and ast being in the 1500's  he fairly knew I had AIH. he set me up for a biopsy but started me on 40 ml of prednisone even before the biopsy as he was that sure. the biopsy was not painful. afterwards it hurts some in the right shoulder and they offerred tylanol and I refused it. another time I will accept the tylanol. it came back positive so he left me on the 40 ml of pred.  then as time went on and checking labs every month he started to lower it.and added 50 mil of azathilprine. in Feb I had a stressful time and my numbers started going up some. not alarming  but up just the same and he kept me at 20 ml for the three months until they went down again.at this point i was also taking 50 ml of azathioprine) I believe it was stress that caused that to happen. I had bloating with the pred. in the face, a bunch on my chest and back also other places as well. those are places that it usually goes to. no one knows why. at first the pred gives you tons of energy. I cleaned and cooked and then cleaned and cooked some more. later as i came off the pred I lost the desire to do both -- ( back to my old self !!) ha !  I only recently got off pred. altogether!!! now I am on only 50 ml of azathioprine ( pronounced  aza- thigh - row - preen ) also known as Imuran. my face swelling has gone down almost completely. it has been a year. DrF told me in the beginning that it usually takes 1 ot 2 years to get it under control mine was racing out of control when I first went to him. it has taken a year so far.he told me it is a very slow process and cannot be rushed.  I believe his plan is to start slowly lowering my aza until my numbers start to go up and then he will decide the dosage i need to stay on . I will be seeing him on oct 25th so will know more then. I think the best thing you can do for yourself is keep a positive attitude !!!!  I have never let it get me down and i hope i never do.  other people will respond to you with thier own stories. everyone is different to some degree. but we have a lot of the same problems too. where are you from ??? the states ??? I am from vermont and it is typical fall weather today -- rain --- the leaves are only starting to turn color but it will be beautiful soon.
have a great day and keep in touch !! so nice to meet you.
shirl

[Maari]

Hi We get to the DC area every other year.  Have family in Laurel, we love all the things to do out there. Last year we visited in October, was beautiful.  We used to always visit in the summer.  We have no children in school anymore, hence no longer have to be limited to the summer months.  Have been there in 100% humitity, 100 degrees and it was not raining. Good luck with your bx next week. Keep us informed about you. Also ask any questions you want.

A note on this forum, each post is limited to 50 comments. We are at 48, so one of us will start a new post and it will up at the top of the site.

Again it's nice to have you here.
M

[SSM]

hey! I could take one of those bahama trips right about now. what a great time you had !!  I did the snorkeling one time at the bahamas and the fish were brilliant ! so many bright colors. too bad you couldn't have your wine. I do ( did) enjoy a glass of that once in awhile but when I got dx with aih I got rid of it all !( that noise you hear is me crying !! )
we are leaving in our motorhome soon and that will be a good vacation for me. memphis to see my brother and sister in law and branson mo. then down to florida for four months and hopefully to new mexico in the spring for a month. I am ready for it !!!!!!!!!
Sossa-- I forgot to mention that I teach oil painting and can plan my own schedule. I am not doing too much of it this year. I do have a class tomorrow and one wednesday. but if i need to cancel a class I don't have to account to anyone for it. so I am fortunate.  what kind of work do you do ?? can you continue doing it at home if you choose to ?? one problem with the work force is half the people go to work sick  and we don't want to catch anything if we can possibly help it. one good reason to work out of your home if you can. on the other hand -- you don't want to live life like a turtle either. I have learned to be extra careful and stay away from sick people if I can.and wash your hands OFTEN WITH SOAP.  
i s that a type of neuropathy you have on your face alice ?? it sounds so painful .
will let you go --
take care and enjoy the rest of today.
shirl

[Sossa]

Thanks for the lovely welcome!  I'm in Maryland (DC suburb) where the weather today is gorgeous, and work at the NIH. My job is scientific management, so it's a bit hard to do a million meetings by phone, but feasible.  And with email and the web, a lot more is possible than years ago.  I'm also very lucky to have a very supportive staff and colleagues.  So, I'm not complaining.  Your point about not becoming isolated is really important...I'm going to have to learn to find a balance. And of course, your point about infection is a great one...probably will help to explain to folks why it's necessary to be out. The biopsy will be next week and I'm anxious to get started.  BTW, I'm 61, divorced, with two parents, one son, a lovely daughter-in-law, and 4 outrageously wonderful grandkids.

[Maari]

Shirl  Forgot to say that I glad you are off predn. Keep a record of any symptoms or lack of, that you notice.  I found it was helphful to have those written down. I was told we are in the high risk category, so we do indeed need the flu shot.  Here in Michigan I just found out that none of the Doctors offices will be giving the flu shot. They say watch the paper for flu shot clinics.  Is it like that in Vermont?

Hi Alice Glad your back and no bad weather to ruin your vacation. Your trip sounds like good medicine. No pain, how nice.  Hope that no pain business stays with you for awhile. I like shopping too.  This weekend we are going to Frankenmuth to shop at Bronners. I have never been there.  Am so looking forward to 3 football fields worth of Christmas items.  I love Christmas and shopping so this is going to be fun.

Sossa Welcome to the forum.  You are right most of the folks here are Hep C. When are you having the biopsy done? I can't help with your question about continuing to work.  I'm a stay at home Mom. I have been in remission for about 1 year and it took about 1 year to get to that point. Was on Predn and Imuran, now just imuran.  Predn is so helpful in getting our immune systems to behave, but I'm so glad to off of it.  My energy levels are about 90% of before AIH. I have a finite amount of energy and when thats used up I sort of hit a wall. Things should get better for you as the treatment works. Be patience and remember you are not alone.
Maari

[allikins]

Hello all! I got my blood work results back and all are pretty good except one, but it is still coming down, so it was still good news! I know that one was in normal range and that's the one that shouldn't go over 40 and the other one was 69 down from 89 and that one isn't back in normal range yet. Not sure what the normal is for that one. I need to learn the meaning of them and what they are, besides just knowing they're enzymes. I  get to go down on the pred a little more thogh, I know that, lol. yea!
Today has been a rough day though, spent a lot of time in the restroom, and liver has hurt all day. Not sure if it's a touch of stomach flu or just the AIH acting up.
lol It has taken me 10 minutes to type this because of my kittens, 2 of them, 8 weeks old, diving me crazy as I type. I guess they have something to say too, lol. One is now asleep on my arm. They come from a polydactyl mommy, who has six toes on each of her front feet. Only one of the kittens has them too. The one was a runt, he barely weighed an ounce when he was born. I had to force feed him with a dropper, because he wasn't strong enough to nurse. He's a fighter, he's now almost caught up to his brother in size, and he's ornery as heck!!! And fearless, he scares me as he jumps off of everything. Not even scared anymore of the dog and his brother is, lol. The dog thinks she has to mother him and carry him around. We call him E.T. because he looked like him when he was younger, lol. The other one is Mittens because of his paws, looks like he's wearing some.
well I have rambled enough, take care all and have a blessed weekend! Alice

[SSM]

hi
sounds GREAT alice !!  congrats !  I bet you're happy to come down on the pred some. i just got off it and I am thrilled. I hope I don't have to go back on but might at some point.
the kitties sound so cute. we used to have siamese and also raised collies but don't have any animals now. we will be traveling around some this winter so don't want the hassle of an animal. but I love them !!
our fall foliage isn't so great this year.  too much rain this spring they say. it is mostly yellows and golds. occasional orange or red.  usually it is brilliant.  it is cold here at night now too.  heavy frosts in the morning !!! good thing we'll be heading out soon !!!!
I am glad your results were encouraging --
take care and stay happy !
shirl