auto immune hepititus

[hatter]

i have been diagnosed with aih for over a year now. was chronic but is now stable. was wonderin how common breast cancer is with medication. am on azathioprine and prednisolone. was also wonderin how people with this cope with bad days. feel like i could smash house up. neva do but horrible feelin.

[Bill1954]

Hi there;

Sorry to hear about your diagnosis. Although this is the hepatitis forum, most of us in here are HCV patients with little knowledge of AIH. There are a few here though; Revenire___ and Marri are two that come to mind. Perhaps they

[hatter]

thanks bill will keep a look out.

[hatter]

sos to be a pest. first forum found to ask questions. could you let me know other AIH forums. would be a help. u right am glad to be alive but nice to know all the same that you are not alone. hospital i go to very rare and no one to talk to. thanks.

[Maari]

I have AIH was dx in 04. I was on pred and imuran, and now am on imuran only.  I was so glad to get off pred and all the side effects that go along with it. I do have arthritis and osteopenia to go along with AIH.  I take meds for those and am now feeling pretty good.

As for a connection with breast cancer, I don't know.  I do know that because Imuran and other drugs we must take suppress the immune system, so cancer is at a higher risk for us.  I am on several forums for folks with AIH, and cancer is not a common topic.  I would think that if cancer was common there would be alot of dicussion about it. Regular check ups are probably a good idea.

About BAD days, I get down once it a while. I read, do things I like and meditate. Talking to others on forums help,( remember you are not alone). Vent, sometimes that helps. I remind myself, I am alive, feel much better that 2 years ago, yes I can't do everything I did before, but things could be worse.  Several people take anti depressants. If the bad days get too much maybe you could talk with your dr.

Remember you are not alone.
Hang in there

Maari

[Maari]

You are not a pest. Ask anything you want. I am more than glad to help you.  This was my first forum also.  It really helped because like you, I have not met anyone with AIH.  I'm my GP first patient, Gastos 2nd patient with AIH.  I like knowledge.  I have less fear knowing more about this disease. While there are not alot of us with AIH here, we do have stuff in common with hep C. There are helpfull people here.

Forums -  autoimmunehepatitis.co.uk  this is my favorite.  There are people who have lived with AIH for 20+ years. They have lots of information, have not had a question yet that someone didn't have an answer for.
       -  Autoimmune_Hepatitis***@****  this is an email forum. Can ask anything at this one also.

Hope this helps. I was amazed to find out, that many of the issues I was dealing with were common to others.  That helps to relieve your mind and spirit.

[hatter]

thanks maari will have a look at those sites. had a bad day yesterday. talk to you later.

[Maari]

Sorry to hear you had a bad day.  Hope you have a better one today. Take care of yourself.

[Maari]

Hope today is better for you.  Just wanted to let you know, I'll be on vacation until the 14th.  If I don't respond that is why.  Take care
Maari

[SSM]

Just to let you know I also have AIH. I am not used to writing on forums. I started 40 mil of prednisone in oct. 2005 and am down to 5 since yesterday. I also take 50 mil of azathioprine. I have had no bad side effects other  than a 30 pound weight gain and red cheeks. some sweating . nothing really bad. i don't like having the disease but it's mine -- I have to live with it so I try to do the best that I can and that's all that I can do. I have a great Dr. he told me " do what I tell you to do  and do not try to change treatment yourself and I will do my best to get you feeling well again. "  I feel pretty good so i guess it's working! i am 67  -- female . no other meds. i will try to touch base here occasionally.

[hatter]

hi. i am 40 years old. 4 great kids and have been diagnosed with chronic aih since april 05. have good days and bad, more bad at the minute but hey there you go am alive. i too have never been on a forum before and its nice to have people to talk to that have same disease. where are you from, england or usa or europe? At minute am fed up of the sight of hospitals again but needs must. hope you keep feelin o.k. lynn.

[hatter]

has anyone suffered blood clotting with aih. have found rash and local gp thinks its blood that has come to surface . so have to go for tests to chec. just wondered if anyone else knew anything. also gettin bad bruises but that could be to do with pred medication.thanks. lynn.

[SSM]

hi Lynn
I have not heard about the blood clotting. hopefully that has cleared up for you. I was told I have had AIH for a long time but I never knew it. by the time I went to the DR. I was quite sick. I feel pretty good right now and I am fortunate that I never had bad days. I keep a positive attitude and I do think that helps. I went on 40 prednisone in Oct. of last year . at that time my ALT and AST were in the 1500's. they started down  and after several months of lowering the prednisone he added 50 of Azathioprine ( Imuran).  at this time I am on 5 of prednisone and still 50 of Azathioprine. I will be happy to be off prednisone altogether so I can start losing this 30 pounds that i've gained !!!  i find being tired is my worst complaint --- I do get tired easily.    I am from vermont USA .I have four children, 11 grand children and 2 great grand children !!!!!
stay positive --- you will get better --- it does take time.
SSM

[Maari]

It could be related to pred. I had thin skin and alot of brusing and bleeding gums etc while on pred.  These went back to normal after getting off pred.

How are you doing?  Hope you are OK

Maari

[hatter]

hi maari hope you had a gud holiday. had a really gud day today. felt like normal. hope you o.k? two daughters gone away with their nanan on holiday. me n hubby left workin. goin off at weekend though so that shud be gud. talk to you soon n thanks. lynn.

[Maari]

Hi Lynn

I had a great vacation.  We went to two family reunions. Lots of visting, hugs, and fun.  Now have to get back to normal routine.  Glad to hear that you are feeling good.

I am 53, married have 3 kids. Have a handicapped daughter, my job is caring for her.  She will be 27 this month. She has 18q- syndrome, is very small and is like a baby in development.  She has quite afew health issues.  She is a great kid happy and loving. I live in Michigan.  Where do you live?

Take care

M

[SSM]

hi Maari -I haven't met you yet. I am from vermont and have AIH . I have been talking with lynn. I look around me and find people worse off than myself -- it keeps me in line.  I hope to be able to get off prednisone this month. I go for labs the end of each month. how about you ? is that what you do ?
I never heard of your daughters illness Maari. is that quite rare ?  it's wonderful that she has a happy spirit. and it sounds like you do too..  that helps --for sure. I'm wondering if you gained weight while on prednisone and if so --- when did you lose it? did you have to be off pred totally before you lost any? I have a problem ( seperate issue) with my right foot and it hurts to walk on it so I don't go walking for exercie and that would help me lose I know. and on the other hand --- if I could lose the 30 pounds -- my foot might not hurt !!!!  I can't win !!!
How about you Lynn? how was your day? have you heard yet what the rash is from.? I did hear that you can get rashes from the med.  my arms ITCHED really bad at times when i first was diagonosed with this. I found rubbing baby powder on it took the itch away.
where are you from lynn?
well --- Enjoy tomorrow ---- prayers for all of us ----
shirl

[hatter]

hi to you both. glad you had good holiday maari. hope your daughter is o.k? you sound so brave. still feelin gud n about to go to cornwall for a few days, tryin tenting again after 10 years this shud be fun!!!! . i am from Barnsley in England. In the delightful county of South Yorkshire. Hope you feelin fine?
Hi shirl how are you? my rash has cleared now which is gud. i too have put on weight with pred,21 lbs, have you tried swimming as this would not hurt your foot? Doctor has said to me that when and if i can come of pred i should lose all the weight i have put on , but slowly, so heres hoping in april next year biopsy report is gud! keep smiling both of you. luv to you both. lynn.

[Maari]

Hi Lynn and Shirl

I did not start to take off the weight until I was totaly off pred. I am using the Michael Thurman body makeover plan.  You take a test to determine your body type and than eat according to that plan. It works, I don't eat sugar, salt, flour and little fat ( a lot like a diabetic diet). I eat every 2 to 3 hours so there is not a hunger issue, and you eat food is certain combinations. I eat rice, potatoes, oats, fruits, vegetables and lean meats.  Don't miss bread anymore. I was relieved that this plan worked, because I thought pred had messed up my metabolism for life.

Shirl you are lucky that you don't need any other meds.  I got osteopina and arthritis along with AIH. I was glad to get rid of the night sweats, bruising, weak bones, brain fog, high blood pressure, high glucose levels, bleeding and tender gums and teeth. I still have the pred caused neurophy (pins and needles) but it is less severe. So compared to a year ago I feel great. I have been on 100mg of Imuran alone since Nov 04. I go to the gastro every 6 months now that I am in remission.

My daughter is missing a piece of the 18 chromosome, it is fairly rare there are about 300 people in the world listed in the  18 registry.  Still have not met anyone in person with it, alot like AIH have not met anyone in person either.

Lynn glad to hear you are feeling better, its nice that you and your husband can get a break.  Are you going to the AIH conference in England? I wish it was not so far, I would love to attend.

Take care both of you

M

[SSM]

Hi
it is so interesting to talk to both of you about this. I don't know why I waited so long. Have been reading the forums ever since i was DX with this.  I am not clever with the computer and that is why!!  HA !
The camping trip sounds like fun --- we bought a motorhome last feb. and went to florida for a month. now it is stiing in the yard waiting for nov. when we plan to take it for 6 and 1/2 months. we will be in florida for four of those months.  My Dr. is going to work with me. I really want to keep him as he is really good.  he is a hepatologist and has had other AIH patients before but not many .. I hope i am not doing something wrong by traveling.  but really -- every month I get my labs done and then call him about four days later and his nurse tells me if i should lower the prednisone or not. I would be doing the same this winter but would have to have the lab fax the results to him. what do you think of this idea ??  does it sound o.k ?   i asked the nurse this morning when i called the office if he plans to take me off pred totally and she said she thought so as long as i could deal with it;. then he will start lowering the azathiopriine. somewhere it will level out and that is probably where i will have to stay. when we were buying the motorhome  we found we also had to trade my car for a car that could be towed so I had that to do too. my husband was working  so a lot of it fell on me.  along with other stuff that time of year -- income taxes, packing for the trip for us as well as the RV.  anyway my numbers started to go up and i had to stay at   20 mil of prednisone for three months !!  luckily they went back to the normal range again and so far have stayed there. I do think it was the stress of all that ,. that started my numbers going up. i feel fortunate that i don't seem to have other problems -- who knows--- i never thought i had this one either ! i love this forum and the UK forum as well. even reading about the other kinds of hepatitus  helps . sometimes some of that is very similar.  my Dr. said I must have had hepatitus A at some time because i still have antibodies of it.  possibly my body was fighting that virus and then started attacking healthy liver cells.  i read that it's a lot like " friendly fire" where the immune system no longer recognizes good cells from bad.
I'm glad you;'re both feeling pretty good today .. me too !!!  
prayers for us all.
shirl

[Maari]

Shirl  I think if you are feeling well, traveling is good for you.  I personaly get a copy of all my labs, I get the labs done before the dr visit and then we can talk about the results.  If there is something I don't understand I check it out on labtestsonline.org  I would take a copy of my medical records with me.  I keep a journal of symptoms, results etc.  I like to be accurate.  As long as you and your Dr have a plan and you have names of just in case Dr, it sounds doable to me.

Hope you keep feeling well and have no trouble as you reduce the pred. I remind myself this is controlable, and I have new normals, so I listen to my body.  Sometimes I almost forget I have AIH.

So have fun planing your trip.

M

[SSM]

thanks for the encouragement.
it sounds like you see  your Dr. every month?  i haven't seen mine since feb.  but I go every month for the labs and  the nurse lets me know what to do. i did make an appt for the end of Oct. before we leave. I have a few questions for him and want to talk to him personally before i head out. He is a really nice person and said he will work with me on this.  also if i do get into a major problem there are a couple of things i can do.  one is fly home.  and the other is see a Dr. ( gasto/hepatologist  ) that two of my daughters work for in florida.  he will be very near-by and already has said he will take me as a ptient if i need him to .  he also is very well respected in the medical field so i feel o.k about it. I don't think i will have any bad reactions since i have already been on azathioprine for some time. hopefully i will be off pred by then.
how about tired ?? do you get really tired? I do by 1:00 --- I usually start out o.k but by 1:00 i start lagging. of course i don't sleep very well anyway so that doesn't help.here it is going on to 11:00 and i'm not in bed yet !



You sound very knowledgeable about AIH. i try to read up about it and ask a lot of questions. I too, feel it is best to know all that you can.  I also quite often don;'t even feel as if I have anything wrong. if it weren't for my hurting foot i would feel almost great.  I have to try to figure that one out. I plan to stop at the poditrists tomorrow and get a medical shoe for my left foot ( that doesn't hurt) to match the one he gave me for my right foot. right now I have one shoe on and one medical shoe and walk lop sided. up down   up  down.  so that should help and I imagine i will wear the shoe more often.  
I read the forums all the time and find so many pepople that are suffering more than me-- I have always had a good attidude about it. what can you do anyway ?? wailing about it won't help--- if It did I would wail but i know better. it would make me feel worse. I am like you --- i find some thing comfy to wear and a hot cup of tea and read a good book !
take care and enjoy tomorrow ---
I think of lynn camping under the trees-- we used to have a tent trailer and it was wicked fun.
prayers for all of us!
shirl

[Maari]

Hi Shirl

I think you really have things covered as far as your trip goes.  It helps to have Dr's lined up in advance. I see the Gasto every 6 months now, same with labs every 6 months.  I get the lab orders ahead of time and get them done about 1 week before appointment. The first 6 month span between labs had me nervous, but I got over that. Over the years caring for a nonverbal child and having to answer questions about her to Drs has made me learn lots about how to talk with drs.  Many have admited I know more about her then they do.  Now when I take her in and say I think she has pneumonis, they check and say you're right. The Liver specialist at the U of Chicago said I was the most organized patient he's seen. I do like knowledge.

I do get tired sometimes, not as much as before.  I seem to have a finite amount of energy and if I do some strenuous activity I hit a wall. But most days I make it without needing a nap. I sleep well now, while on pred my sleep was not always good. I broke a rib while on pred, the er doc gave my Loratab(did not need all of them) so on those bad night I'd take 1/2 a pill and sleep soundly. With the no alcohol, not even cough syrup order, I found that NyQuill liquicaps have no alcohol in them and also work on those bad nights. I take a nap if I need it now and don't feel guilty about it.

Hope the poditrist can help with your foot pain. Walking lopsided can make other parts hurt.

We also used to use a popup camper, it was fun.

Take care

M

[cuteus]

I must have missed the post about you having AIH, since you mostly talk about your brother's status, just wanted to say that I wish you a complete stabilization of your AIH and your brother's cure from HCV.

hatter and ssm; I also wish for your AIH to be controlled and for it to have minimal influence in your daily life.  It seems your condition places you in a worse position than hep c would.
I hope you remain well

[cuteus]

OOPS! it seems I confused you with maamir! never mind about the brother, but all the rest stays!
be well