Autoimmune Hepatitis & other autoimmune diseases

[Jody515]

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

[Sarad]

There is another forum autoimmune hepatits with a few of us allway writing and supporting each other. Find it and we would love to hear from you.
Sarad

[iloveigs]

Hi Jody

I have a paternal first cousin that has RA

The other forum Sarad's referring to is under Autoimmune Disorders....there's a post that she started that we've been talking on for a while...come join us!

Erin

[9743km]

Hi Jody,
I'm the 3rd member of the group on the other website that Sarad referred too... Welcome!!!

[skini]

Hello, my mother 63 y/o, went to the Dr. last year (july 07) for a severe headaches and in the blood test she come with the enzimes severe high, the doctor inmediately told her to stop any medication she is taking and change diet, she has never been a drinker, very healthy foods only. She also have high pressure, (doctors say emotional high pressure do to stress), and back in december she has UTI, so she need to be treated, also she start to suffer arthritis, the doctors think the enzimes went to high do to so many pilds for the arthritis, so they stop all the pilds. But for the UTI she has to have an antibiotic, bactrim, didn't work so they put her in cipro, didn't work neither, so they give her a vaginal cream, seems that work, but know is not only her hands hurt for the arthritis, also her legs and back, she start to have fever, up to 102 and swelling in the hands, she went to the hospital, they have her under observation for 2 days and sent her back home and told her not to eat any medicine, but she is in a lot of pain, should we take her to a different hospital? or that shoul be the diagnostic and should be in a lot of pain?
Please some one help me to help my mother.
Thanks..

[Jody515]

Hi Skini,
Sorry, but I don't understand.  Are you saying she was diagnosed with Autoimmune Hepatitis?   I believe in order to be properly diagnosed, she would need a biopsy.  Have her enzyemes been high or what??? Before my diagnosis, I did have upper body arthritis to the point I couldn't dress my upper body.  Are there others in your family with any autoimmune diseases??  
Jo

[Kande]

Hello Everyone, I just stopped by your community to make sure everyone knows about the new Transplant Forum. I didn't know if anyone would be interested in the forum or not. But I do want to invite all of you. If anyone has had a transplant, would you consider sharing your story. I feel the new site will be of great benefit to a lot of people and since we are kind of sister sites I thought we could help one another. Thank you!  Kande

[iloveigs]

Hi Jody

In response to your question over in the other forum about getting off prednisone. I've been on it since Nov 07 and my body has responded such that my LFT's went immediately back to normal after starting the prednisone. My GI began tapering the dosage as soon as we saw that my enzyme levels had dropped. I was told from the very beginning that they would get me off the prednisone as soon as possible and switch to another immunosuppressant, which I'm on now too (Imuran).

My question for you would be, how are your LFT's? Are they still really high, or stable in the normal range? Since everyone is different, it may take longer for certain people to get off the prednisone. I would definitely talk to your doctor about it b/c you don't want to stay on it for a long time.

[Jody515]

Hi iloveigs,
Thanks for the info.  All my blood work has always came bk fine.  I see a hepatologist annually but he has never suggested that I would ever go off the prednisone.  I also take the Imuran & have since the beginning.  Perhaps it is due to I did have HCV & they are afraid of a relapse of one of the diseases.  I don't know but I will ask on my next visit which is in May.  I do appreciate you letting me know this, I am making a list of questions to ask about this on my next visit.  Jody

[gentleliver]

I'm shocked they haven't said anything about getting you off the prednisone. My doctor was all but apologizing about putting me on it in the first place and seems cognizant of the fact that I need to be off of it, or at a lowered dose, asap.

[iloveigs]

Just got back from my GI appt.

AST: 42
ALT: 32

I get to drop to 5mg Pred today and I'll recheck LFT's in 2 wks. He said at that point, if all is normal, I'll drop to 2.5mg for 10 days and recheck one more time.....then I'll be off it finally!

Jody, my GI mentioned today that some people have to stay on a low 'maintanence' dose of prednisone, like 2.5mg, but he didn't say if that was a permanent thing. He told me today that I'll always have to take Imuran for it (as long as my body reacts correctly).

Erin

[Jody515]

iloveig & gentleliver,
I remember last yr when I was there complaining to his asst about something but can't remember what.  She said if necessary she would talk to him about trying to get me down to 2.5 mgs of prednisone but we discovered something else was the problem.  The only thing I do know is that the AIH was active for about 5 yrs before it was discovered & that damage had been done, not sure how much, another question to ask when I go bk, & maybe that is the reason being damage, just don't know.  They have never said anything to me about removing the prednisone though.  Guess I need to find out why. Anbody else out there still on prednisone for long periord of time?  jo

[Jody515]

So to all out there who are off of prednisone & have been off, how long & how are you doing?  I need to know these things prior to go to see doctor.  I know prednisone isn't good for you & the consequences one could have from it.  I guess I have just had so many other things on my mind to worry about I really haven't given this much thought.
Thanks for any imput please.  Jo

[9743km]

iloveigs...First let me say, I am so happy for you.  What did your GI say about your rib pain?  Congrats on the prednisone....

Jody515...I have been on prednisone since March,07.  My Dr. told me the max he would want me on the prednisone is a year.  Well, it turns out my disease is a lot more aggressive then he hoped, but he told me the other day his goal is to get me to at least a "maintenance dose" anywhere from 1 mg to 5 mg.  It depends on the person.  I would say you need to definitely discuss w/your Dr.  I am currently down to 10 mg, they are going to check me in 2 weeks.  If all goes well the next drop is 7.5 and he said it just becomes a body game at that point.  They have to see what your body will allow.  His hope though is to just be on the immunosuppressent.  Definitely talk to your Dr.  
By the way, my Dr. told me my disease was probably active for about 2-3 years before we discovered it as well.  May be why my disease is so aggessive, much like yours.  I did have some liver damage as well, but he won't discuss how much.  He tells me to focus on the recovery, and he will deal w/the rest..
Good Luck talking to your Dr....

[Sarad]

Erin: Great news about the prednisone way to go. How are your ribs doing you must let us know exactly what it is.
Kim: If I remember correctly you mentioned that you went down on the prednisone. Way to go. You must be so happy.
Well I have been feeling better lately less nausea.
Jody: You have been on prednisone for a long time. I started May 1, 2007 and from the begining my liver Dr. said that the goal is to get me of prednisone with a year or less. I am now off of it 9 month later.I am also on imuran from the begining 75 mg and hopefully I will go down to 50 mg by the end of March. Then I will probably stay on it for a long time.
You will really have to check this with your Dr. I know that being on prednisone for so long is not very good but I am not a Dr. Wish you lots of luck and keep us posted.
Take care ladies and be strong.   Sara

[Jody515]

Hi Everyone,
FIrst let me start by apologizing to iloveigs & all who are doing so well with their treatment, I am very happy for you.  I hate to say I have had this disease for so long & have never paid much attention to the blood work or know what is good & what is bad other then the enzymes or to when my doctor tells me everything is okay.  So congrats to those of you who have achieved good blood work and hopefully everything will remain that way.
I guess because I had 2 liver diseases going on at the same time & went into shock over it that I just couldn't comprehend enough to stay on top & then when I took that other treatment for so long & was so ill it just couldn't sink in that I could ever become that ill & whatever knowledge I had went out the window with that treatment even.  Chemical treatment for that other disease leaves your body thru the head & my head is still not clear from it all.
I do intend to speak with my doctor about the prednisone but I am afraid I am probably one of those persons who will have to be on prednisone for all time. My doctor spent 8 yrs at Miami hospitals specializing in autoimmune diseases prior to going into hepatology. But I still need to find out if it is going to be a forever type of disease to where I have to take that drug always.  I certainly hope not but it seems so.
Again I am so happy that so many are doing okay & for those that aren't responding well, I will pray for you everyday.  Hugs, Jo

[9743km]

Hi Jody,
How many mg are you on of prednisone?  And are you on imuran as well?  You may of mentioned it somewhere along the line, but I can't remember...
Trust me, I know what its like to have this disease be so aggressive.  Mine seems to be a difficult case as well.  The last time I spoke to my Dr. he told me some people w/this disease handle it very well, and others need more work.  We seem to be the "more work" people.  Its just aggressive.  I know someone whose had the disease since she was 12 years old, she is now 40 and she is always up and down on her meds.  She never seems to really be able to get off.  Though they always try to get her to the lowest dose possible.  Good Luck!!!!!!

[Jody515]

Hi,
I am on 5mg of prednisone and have been since the year they weened me down I think  would have been I believe 2002.  Yes, I am on the azathriopine (imuran) 50 mg also. As a result of the prednisone I also have to take something for Gerd & my bones.  I really wish I could get off the prednisone because of my bones but just don't know if it is going to be possible. My dexascan this yr showed my hips staying the same but my spine lost density so that scares me somewhat. I am going to speak with my hepatologist when I return in May to see if the prednisone can go & if not, then maybe there is something else I can take to strengthen my bones.  I also take calcium twice a day to try to help. This has not been a nice disease but I do recognize that there are other people out there with much worse so I guess I shouldn't complain.  Thanks for the uplift. Jody

[rockmelon44]

Is everyone moving to the new website?? I will post this on both just in case.  I am doing well I have been on the 6 mp for about a week and loving it.  Some bathroom issues but its okay.  My bloods seem to be staying normal.  Has anyone had high blood pressure from their pill or the condition or anything??.  Been lossing weight got almost 10 pounds off! :-).    Doing Wicked finally feeling like I am in control of this diease.  Hope you ladies are doing well.. take care. talk soon.  :-)

[Jody515]

Fine with me wherever you all decide to post at.  Leaving Saturday morning for warmer weather in Florida for about 11 days, so I will pickup where ever you all decide.
Glad to hear you are feeling good rockmelon & in control of disease. Hope all rest is well also, feeling good myself especially at the thought of getting away from this snow & cold for awhile

[9743km]

I hope you have a fabolous trip!!  We are leaving as well in 18 days.  Can you tell I'm counting down.  This has been a tough winter.  That is for sure...

As far as your prednisone goes, 5 mg is considered a maintenance dose.  My Dr. did tell me that some people need to be on 3-5 mg forever.  They don't know why, but some people will never be able to go off 100% and some can, and do great.  I have a feeling w/how aggressive my disease has been over this last year, I will fall in to the category w/you.  I believe you said your disease was aggressive as well.  That may be part of the problem.  But you are right, there are a lot worse things out there.  By the way, how is the swelling at 5 mg.  Still the puffy face?  I am so over that.....

So glad to hear you are down 10lbs.  I look forward to the day.  I'm working out like crazy but still being on 10 mg seems like I never lose anything.  I have gone down a size in my clothes, but I just seem "flabby"...Isn't the 6 MP great?  I love it as well.  I knew you would be fine!!!!

[Jody515]

Hi,
Doing last min preps for trip & am so excited to get away & into warm weather I can't even think straight. I am so sick of looking at snow everywhere.  Rain today & in 40s so it is starting to melt but I need some warm sunshine.  I know we will enjoy our trip & so will you km.
Look all, you will lose the weight from the prednisone overage.  I went from about 120lbs overnite it seems when I first went on the large dosage to 163 lbs.  I am now down to 132lbs & that is fine with me, don't really want to lose any more.  My face is not swollen, never did swell that I could see, although I have known relatives faces who did swell bad from it. Yes, this disease was very aggressive with me but Thank you God, it seems to be under control right now.
Hope all has a good few wks in my absence & Blessings sent to you all.  Jo

[9743km]

Jo....Have a fabolous trip...

[Sarad]

First of all, all you ladies going on holiday to a warmer place have a great time. We all need a break now and then.
Hey Kim how are you doing? So how much ped are you on now?
I am doing better but very tired lately and not lots of energy like I'm use to having. I guess better to deal with this than to be on prednisone.
My sweling is really going down mostly around the face I still have to work on my waist which will be a bit harder.
Erin: Haven't heard from you in a while hope everything is OK.
By the way Kim I got your e-mail on my private mail I wrote back but I think there were problems, thanks for the concern.
Well ladies take care.

[iloveigs]

Everything is OK on my end.....and I'm NOT going off to somewhere warmer...I'm jealous!!

Tomorrow I go for a blood draw and will call Thur morning for the results. If all goes well, I'll get to drop to 2.5mg pred. I think he will have me go 10 days (hopefully) on that dose and then check again, then I'll be able to get off it. I'll let you all know when I get the results.

Erin

[Sarad]

Hey Erin
Lots of luck with you labs.
Hopefully all will go well and before you know it you'll be off prednisone.
Keep us posted.

[iloveigs]

Good News!

AST: 41
ALT: 21

I'm waiting for my GI nurse to call me back and hopefully I get to drop to 2.5mg!!!

[Sarad]

Way to go, great news.
Keep up posted.

[gentleliver]

That's fantastic news! I've dropped to 15mg. of prednisone and am ecstatic. I'll be totally off by April if everything goes as planned. Part of the reason they are rushing my taper though is because I'm developing glaucoma. Anyone else had this side effect from the amazing steroids?

[9743km]

Hey ladies....Erin great news w/the prednisone.  Did you hear from your Dr.  Are you down to 2.5 mg.  That sounds wonderful!

Sara, I did get your email back.  Thanks.  I am down to 10 mg finally of prednisone.  Had a little set back this week, I was just feeling terrilbe much like I was feeling when I became allergic to the imuran.  Well, I feared the same thing was happening.  And they did determine that I was getting a large hit of the 6 MP but they don't think I am allergic, they think I need to break it up.  So I take 50 mg in the AM and the rest in the PM.  I've been doing that for 3 days now, and I feel great.  Thank God.  My Dr. sent me for lots of blood tests last tuesday just to see what was going on, and for the first time ladies, I threw up.  They took 9 viles of blood.  I literally threw up.  How embarrassing.  Anyway, I see my liver Dr. on April 2nd and if my labs are still going in the right direction they'll reduce to 7.5 mg.  Yahoo!!!!!  How are you feeling?  I know you said you didn't have much energy are you getting it back?  Are you on 0 mg of prednisone?  I'm sure that is a real body shocker.  Just going to 10 mg I notice I'm much more tired.

Well ladies, I am leaving in 11 days for a cruise and then a couple days in Florida.  I am so excited.  This weather is terrible.  Hate, totally hate winter...We will be gone for 10 days.  Yippee !!!!  I have my cousin and her husband staying at my house to watch our dog and just run things around here, so I'm glad someone will be running things around here, and I'm real glad it won't be me!!!!!!!!!!!  Ha ha

Take care everyone and have a great weekend!  Kim

[9743km]

Hi there,
I forgot to respond to your question regarding glaucoma.  What is that?  I'm not familiar. I don't believe I've had any bad side effects from the prednisone yet.  I went for a bone scan to make sure everything was okay, and it came back fine.  Other then that, I don't know of much more.
Take Care

[iloveigs]

I'm down to 2.5mg prednisone now and get to quit on the 20th. Then I'll recheck labs on April 4th.

As awesome as this is, I'm afraid that my joints symptoms, probably connected with the Lupus are coming back now. But, I have an appt with my rheumy on Monday and can address this.

Thursday night my husband broke his right ankle. What a joy. 2 years ago he almost killed himself on his motorcycle and nearly lost his left leg. It has taken a long time for him to recover from that and his left leg is not very strong. And now this. Fortunately it was a clean break below the ankle joint on the non-weight bearing bone and doesn't require surgery. But he is having a hard time with anxiety and last night said he wanted to get his dremmel and cut the cast off. Great. So last night I took him out real late to the movie rental store to try to get him mind off it. He's finally sleeping quietly, so hopefully today will be better. I keep telling him that after what he went through 2 yrs. ago, this is a piece of cake and not permanent.

Anyway, I hope everyone is doing OK. :)

Erin

[Sarad]

Kim: Down to 10 mg that's great.Sorry to hear about you thowing up hope your doing better. Wow a cruise, sound great. Have a wonderfull time.
Erin: 2.5 mg great,and you'll be off in April way to go. Sorry to hear about your husband.
Yes I am completly off pred. however my body is having a tough time adjusting. It was on such a high for so many months now I just can't stay awake. I find myself falling a sleep on the couch before 9PM. I hate it so much , it's just not me. Hopefully I will adjust soon.
Gentleliver: you are also going down on pred way to go. I must google glaucome I have no idea what it is.
I have my first blood tests since I've been off prednisone wish me luck everyone.
Well ladies good luck and be strong.

[AshleyBaker]

Hi Jody. I was never formally diagnosed with autoimmune hepatits, yet, but was told by one of my several doctors that "it's coming." I have very high antibodies. I was diagnosed with Sjogren's Syndrome. I have been having liver isses for the past several years. It was about a year and a half ago that I was so sick that I decided to investigate it. My liver enzymes were very high as well as my antibodies which stay high. I have periods of exacerbations...usually keeps me in bed all day. Miss work and the like. I'm already taking a form of an immunosuppressant.

My mother had hashimoto's thyroiditis.

I understand that if you were ever diagnosed with mononucleosis (a virus), you can develop the Epstein Barr Virus. Both of these things can bring on autoimmune hepatitis. The virus's cause your body's immune system to become super aggressive....in turn, turning on your own organs. I've had mono as a kid. And chicken pox. I think the article said the same thing about chicken pox. So double whammy for me and my family.

Best wishes to you Jody.

Ashley

[9743km]

iloveigs....Terrible news about your husband.  How did he break his ankle?  Taking care of the men is worse then taking care of ourselves isn't it?  I hope he recovers quickly from this...
Such exciting news for you.  By the 20th you'll be off the prednisone.  That is great!!!!!
Let us know how your rheumy appt goes...

Sara...They do say once you are off the prednisone it takes time to recover.  I've been on prednisone since March of last year, I'm probably going to feel like a ton of bricks hit me everyday.  How about vitamins??? Energy drinks??? Anything.  Ask your Dr. and see if he suggests anything...

Hi Ashley...Just make sure whatever you do you get w/a Dr. and get diagnosed right away.  The longer you wait the more liver damage you are putting yourself through.  Everytime those liver numbers are high those are the amount of cells it is killing on the liver everyday.  Your body can only keep up w/re producing so much.  Push someone to get you a liver biopsy immediately, and from that they can tell what is going on.  I think you mentioned you are on a immunosuppressent.  Is it working?  Are you on prednisone?  That is the drug that all of us are immediately put on.  It is the fastest reactor to this disease....Good Luck!

[Jody515]

I got back in town Tues morn at 3am.  Getting thru Atlanta was a 3 hr jaunt. Many accidents, one fatality, & much traffic.  As much as I enjoyed getting away (especially since we had 15inches of snow & blizzard last Fri & Sat I was glad not to be here.
Florida was great but much cooler & more rain then expected, but still nice.
Kim, if you haven't left yet I hope you have a wonderful time on your cruise & your trip to FL.
iloveigs, I am sorry about your husband, mine also rides bikes & that is one of the things we did while south, go to that Daytona bike thing. I hope he recovers well without any other problems. I also hope you will be able to go without the prednisone. That would be great.
gentleliver, I have never had a vision issue with this disease but I do know that it affects us all in different kinds of ways.  I know your eye issue will have to progress before they will try to remove that.  I am sorry.
Ashley, this is not a thing to play with.  You should request a biopsy asap. Please do as Kim says.  This is nothing to play with.  Especially with your enzymes so high.  That is what so hurt my liver. I know that you can have the beginnings or so the doctor thinks but please believe us that you can be hurt.  Take care.
Sarad, hope you are feeling good.  How are things across the ocean? I would love to travel someday out of the country.
Well, I am kinda tired right now, took me the last 3 days to catch up with all the laundry from the trip & the next few days will be on cleaning the house, yukkkk!  Signing off for now & all take care.  Jo

[9743km]

Jody515.  I have not left yet.  Leaving on Tuesday.  Glad to hear you had a nice time.  My Uncle was in FL as well last week and he said they had quite a bit of rain.  Hope it is out of its system before we get there.  It just feels good to get away doesn't it?  But we always return to reality.  I don't think a vacation would be so good if we didn't have a reality, right?

Iloveigs/Erin....How is your husband?  Is he still driving you crazy?  Ha ha...Hope you are feeling well on 2.5 mg.  

Talk to you soon!  51 degrees, birds chirping and sunny here today....YAHOO!!!!

[Jody515]

Kim.
Hope you have a wonderful trip, it is good to get away but nice to get home also once it is over. Yes, it is warm here today too, around 51 or 52 but it is raining.  We had sunshine & 63 yesterday so perhaps spring is on its way afterall.
Sorry to say the couple we went with, we left down there for a few more days & the day after we left he went to hospital for terrible pain in his back & found out he needs 5 by-passes so he is still in hospital down there for surgery, maybe month before they get to return.
Hope all the rest is well & send my good wishes to all.  Jo

[iloveigs]

Hi everyone

Glad to hear that most everything is going OK.

My husband is ill now, probably with the flu, on top of the broken ankle. So, I've been playing nurse for the last couple days. Nice to focus on someone else every once in a while (not that I want him to be sick though).

I have 4 more days of taking prednisone. So far the only troubles I've had are that my joint pain in my hands/wrists/fingers has returned a little bit, but my rheumy thinks it's just from the withdrawl and that it will get better once I'm off for a couple weeks. We'll see, I hope he's right.

Tomorrow morning I'm having a couple old rock walls in my backyard ripped out and redone with nice retaining wall stone. Then, as soon as we get the permit, we are having a 12' x 19' deck built with a door made going out to it from our living room. I'm super excited about it (but not about the debt, but oh well, must enjoy life) b/c we will then have direct access to our huge backyard so we can just open the new door and take all the dogs outside that way and not have to collar/leash them up. It's going to be so cool, I can't wait.

Anyhow, I agree, Ashley, that you need to get a biopsy asap.

Hope everyone is having a good weekend :)

Erin

[Sarad]

Hi Ladies,
Well I got all my labs back and I'm glad to say that my numbers are great. My cholesterol is a bit high but my liver doctor said that it is OK and there is nothing to worry about. AST-23 ALT-22.
Erin jus a couple of more days and your off prednisone thats great. However it kind of hits you pretty hard. Like I've said I am tired all time. Good Luck I'm sure you'll do fine.
Hope your husband is feeling better.
Jo: It must have been great just to get a way for a bit we all need it once in a while.
The weather here is just getting warmer and warmer. I love it. I just hate the snow.
Kim: Your off in a few days, have a great time.
Ashley: I would also agree with everyone else get a biopsy done. It is the only way you will know what is going on with your liver.
Well ladies be strong and have a great week.

[9743km]

Oh Sara, that is great.  Your numbers are holding well w/no prednisone?  Awesome!!!!  I guess the imuran is doing the trick.  Wonderful.

Erin...Now a husband w/the flu, huh?  Man, bad ankle and sick on top of it.  When it rains it pours...But I can imagine that it is nice taking care of someone else.  Nice to get our minds off of ourselves.

On that note, anyone watching Oprah's Big Give?  Love, love, love that show.  So refreshing to see a reality show not focused on themselves.  We watch it w/our kids.  Just want them to see life is not about you, it is made for helping.  Anyway, my little plug to that show.  

Jo...So terrilbe to hear about your friends.  That has to be kind of scary for both of them.  In a state where they don't know anyone, at a hospital not w/there regular Dr's and I assume she is in a hotel alone.  Oh WOW.  When is he having the surgery?  Hopefully they have some family going down to help out.  
Well its supposed to be 50 and sunny again today, hope everyone else's weather is the same...

ENJOY YOUR DAY!!!!!!!!  

[Jody515]

Hi everyone,
Sorry to say I am kinda ill today, got a virus that dehydrates & hard to move around.
Just want to take a min to wish Kim a good time on her vacation & to say to Erin how sorry I am her husband has the flu I know that must be a bit much with the broken bone. But am glad about the prednisone. Sara, congrats on the blood work, keep it up lady.  My brother bk in hospital, liver just about gone now, time frame running shorter, I wish I could say more, but just too sick myself right now, take care all, I will be bk when feeling better. Sun out today but up to 3" rain heading our way tonite & tomorrow. Everyone love & enjoy life because that is what is most important.  Jo

[skini]

Hello Jody, I am sorry you didn't understand me and is taking so long to answer you, yes my mom has been diagnose with Autoinmune Hepatitis, and start a treatment with prednisone. Does this ever get cure?, she start with small dosis, and rx goes higher every time. I hope you are feeling better.
Skini.

[Jody515]

No cure for this but it can be controlled, don't know if forever or not at this point in time. Just have to wait & see but hopefully so. Best wishes to your Mom. Is she on the Imuran yet?

[Sarad]

Jody515: Hope you are starting to feel better. There are lots of ups and down with this disease I remember days where I had so much pain and felt so week and tired.
Try to keep stong.
Skini: Hope your mom is doing OK she should sart feeling better once the prednisone starts working.
Well I've been off prednisone for 1 month now and so far everything is going fine. Just really tired soon but I guess better being tired than being on prednisone.
You ladies be strong and possitive.

[Jody515]

Sara so glad to hear you are off the prednisone & all is going well for you except alittle tiredness.  Hopefully that will go away over time? I do hope so, although I know I still have a problem sometimes with the tiredness & don't think it really associates with the prednisone but don't really know.
Erin,you off yet & if so how are you feeling? (I'm trying to associate real names with the password type names still having small time remembering) How is your husband doing? You will love your door opening onto the deck. We have that here except our yard has the privacy wooden fence rather then stone one.  Our dogs that way are free to go out whenever they want & in spring & summer I sit out there with them quite a bit.
Skini, hope your mom is doing okay? I know it is quite a shock when you find out things like these.  The thing is, once one member of family comes down with something that is autoimmune. others in family needs to be advised that the gene is there for all types of issues.
I am still not quite back to feeling good, guess we picked up a virus on our return trip with all the food stops etc.  
It has rained here this wk since Monday eve & we have accumulated about 6".  Hillslides going on all over the place & rain collecting really bad in low lying roads to where people have had to be resqued & any that are living by the OH river are in big trouble with flooding (except where a flood wall exists)
Ladies, have a wonderful evening, think good thoughts & speak with you all again soon. Jo

[ConcernedMom1987]

My 18 year old daughter was diagnosed with autoimmune hepatitis in Oct, 2007.  She became very ill with acute hepatitis and her ALT was at approximately 1500 and her AST at approximately 900.  She also had other elevated liver function results and her INR was elevated.  After being seen by a hepatologist and having a biopsy, it was concluded that the autoimmune hepatitis was a result of the Minocycline she was taking for acne.  She has so far responded well to prednisone.  The doctor is trying to decrease the dose, but I noticed her enzymes were up a bit with her last labs and am anxious to see her next lab results. She has a cousin who has inflammatory bowel disease, which is considered an autoimmune disease.  I have a cousin with lupus.  Other than that, I am not aware of other autoimmune diseases in our family.  

She is feeling better, but gets a lot of headaches and sleeps a lot.  She also seems to get sick with nausea and vomiting more often than the average person, which concerns me.

At this point, it is unknown whether this disease will be a lifelong problem for her.  The doctors say that since it is most likely drug induced, it may not be with her for her whole life, but there is no way of knowing at this time.

[Jody515]

Have they put her on Imuran also?  I never had the issues of feeling sick all the time so I don't really know how to respond to that, everyone seems to have different sides with this disease.  If other family has autoimmune issues, there could be a gene that connects all but not really sure, but some doctors believe so.  I had a cousin who passed recently from an autoimmune disease, her mom passed early from lupus & I have 2 brothers with serious autoimmune diseases, plus both my daughters have Graves disease.  Hopefully your daughter won't be troubled for a lifetime with this, I hope not. Best of luck & let us all know how it goes.  Jody

[ConcernedMom1987]

They were going to put her on Imuran, but once they determined it was drug-induced decided not to.  She started in Oct on prednisone at 60 mg a day and has now decreased down to 5 mg a day.  I noticed her enzymes went back up a little on her last lab test, but the doctor apparently wasn't concerned.  I am anxious to see where her enzymes are with the next test in a couple of weeks.

My prayers are with all of you.

[Sarad]

Sorry to hear about yout daughter. She went from 60 mg to 5 mg very quickly.
I went through a lot of vomiting and pain before prednisone. I started on 40 mg may 1 2007 and in july went down to 20 mg gradually. My numbers went up again and I was vomiting again my liver doctor put me back up to 30 mg untill October 2007 and then went down gradually untill I got off in Febuary.
Just from my experience it seems to me that she went down way too fast. I'm no doctor or anything but maybe you should suggest to her doctot to go up on the prednisone again for a while also if her labs are high there is no reason she should be suffering so much.
Good luck and keep us posted.
Hey ladies be strong and positive we must with this disease.

[ConcernedMom1987]

Sarad, thanks for your comments.  We will definately keep a close eye on her labs and follow-up with the doc.  It is funny now, how we sort of live for each new test result.  This has been such an eye-opening and frightening experience.  In my daughter's case, she may have never developed this disease had it not been for the Minocycline she was taking for acne.  I don't think we will ever know for sure though.  

My best to all of you.

[Twilight_Princess]

Sorry to intrude like this, but when you said pain where was the pain? I was put into the hospital a few weeks ago because of elevated liver enzymes. I've been having all sorts of abdominal pain, including pain in the liver. I was taking Spironolactone for almost 2 years until my Endo doctor took me off of it. He took me off of it because of the elevated enzymes. I was just curious about the pain.

To All: If this is medication induced, would I have to have yellow skin and eyes? because I don't have that symptom.

[Sarad]

My pain was in the upper abdomin (abdomen)  just between the rib cages and liver area.
Hope your feeling better now. Do u have AIH?
Take care everyone
Sara

[Twilight_Princess]

That is exactly where my pain is! I knew this pain wasn't normal.

Nope I don't have AIH, but I'm beginning to think I have it. My primary doctor seems to think I have stones, even though none was found on the ultrasound, HIDA scan or CT scan and I don't have a gallbladder. I don't think it's stones, but he does. I will be making an appointment to see my Gastro doctor soon to see what he thinks. I am just not satisfied with "stones" being the diagnosis. I believe it is something more serious. I guess I have to be my own advocate as far as my doctor is concerned. Thanks for answering my post. I really appreciate it :-)

Take care.

[9743km]

Hello Everyone....Well, I am back in town.  Had a fabolous time.  The weather in Florida was wonderful and the weather on the cruise ship was even better.  Came home to 38 and snow.  Now, come on?  Rough way to come back after 10 days of great weather.  Anyway, enough of that subject......

Jo...How are you feeling now?  And what is going on with your brother?  I was quite sad reading your remarks about him.  It must be devastating to the family.  Let us know how he and you are doing?

Erin....How is your hubby?  And how are you feeling on 0 prednisone...

My liver nurse called me the night before my trip last week and told me to have blood work done before I left. so I went to the hospital at 6 AM got blood work, and left for my 10 AM trip after that.  Everything seems to be looking good.  The 6 MP I am taking (which is basically imuran, but for some reason I'm allergic to it so they switched me) was starting to toxify my body.  So they had switched the amount I was taking.  So my nurse called me in FL and said that everything was back to normal.  I'm still on 10 mg of prednisone and 100 mg of 6 MP.  I go see my liver Dr. on Wed, March 3rd, hopefully my numbers will look even better.

Concernedmom....I have to agree w/my other friends on this website.  Going from 60 mg to 5 mg of prednisone seems a little odd.  I started on 40 mg last March and a year later am still on 10.  Now, my AIH was a little aggressive, but before my Dr. knew that, he told me the "weening" process of prednisone must be slow.  Especially at the end.  Once I was down to 15 mg they only remove me 2.5 mg at a time.  15 to 12.5 to 10 mg.  My Dr. told me if all looks well on Wed. I'll go down to 7.5.  Look in to that w/your daughter and her Dr.  I never had any nausea, only in the beginning when my liver numbers were through the roof.  As soon as they were controlled I was fine.  Did you get your daughters next set of numbers?  How do they look?  Talk to your Dr. about that and let us know....

Sara....How are you feeling?  Have you gotten any energy back?

[ConcernedMom1987]

I want you all to know how much I appreciate your information.  My daughter's prednisone was decreased by 10mg at a time, but now she has 2.5mg tablets & was taking 3 but is down to 2 daily.  She has bloodwork on 4-4-08.

To Twlight Princess:  My daughter's AIH manifested as acute hepatitis.  All of her liver tests were highly elevated, including her bilirubin, but she was never jaundiced. She also had vomiting, itching all over (which is a symptom of a liver problem), joint pain in her wrists and a severe headache.    

[iloveigs]

I find it interesting how different doctors go about prednisone reduction.

I started on 60mg at the beginning of Nov 07. 2 weeks in I was reduced to 40mg. 2 weeks after that I was reduced to 30mg. Then after 2 more weeks I went to 20mg. I think at this point I had to go a month on 20mg, then I was reduced to 10mg for 2 weeks. Then I went to 5mg for 2 weeks. Then to 2.5 for 2 weeks and now I've been off for about 9 days.

My case of AIH is on the mild side I suppose. My LFT's were in the 200's and 300's when it was discovered. I had major joint pain that jumped around all the time.

Since being off the pred for under 2 weeks, the joint pain has creeped back. Well, it started coming back at 2.5mg, but my rheumy said he thought it was from the pred withdrawl and it would go away a couple weeks after being off it. Well, I hope he's right, but I think it might be the Lupus at work.

Right now I'm waiting for my GI nurse to call me back to tell me if it's ok to have a cortizone shot in my right elbow for tendonitis. I'm hoping it will be ok b/c I really need it!

My husband is doing better. He's pretty much over the flu now and is wearing a 'cam walker' for his broken ankle. He is definitely raising my blood pressure with this whole situation though. He pretty much disregards what the doctor has told him to do. ie....cut his cast off after a week when it got wet in the shower (hence the cam walker), walking w/o crutches, and walking on the ankle w/o the boot on. I guess he thinks he's invincible.

Well, I hope everyone is doing OK. Have a wonderful weekend.

Erin

[9743km]

We'll look forward to hearing your daughter's results on 4-4-08.  I think iloveigs is correct.  There are milder cases of AIH and more aggressive.  My Dr. told me after about 6 mos in to it that my case is a lot more aggressive then he thought.  When I first saw him my liver numbers were in the 12-1300's and my bilirubin was at 6.  I had liver pain as well.  Not much juandice either.  I did have some itching too.  Now my liver numbers are in the low 60's and my bilirubin is normal, but its been a year in the making.  So my weening process has been slow.  I would ask your daughters Dr. to evaluate how severe he thinks her disease is.  That may make a difference.

iloveigs....We can take our illnesses over our hubby's being sick any day, huh?  They tend to like to be there own Dr's.  My brother n law had stitches and decided it was time to remove them, so he did it on his own.  Now come on?  Who does that?  Men...I hope his ankle mends very, very soon...For your sake.  Ha ha...

Jo...Let us know how your brother is doing...

Still not happy to be home....Kim

[b1b2]

I've been diagnosed with hepatitis but my Dr can't still pinpoint what type it is yet. My bloodtest 2 weeks ago,shows elevated liver enzymes : Alk.Phos.134,Gamma G.T. 153, ALT 53, AST 59, I had ultrasound a few days later which turned out normal. My latest bloodtest shows, Alk.Phos.143,Gamma G.T. 184, ALT 72, AST 54. I'm negative for Hepa A,B,or C. My doctor said my eyes are a bit yellowish but not my skin,other symptoms as nausea and fatigue (not much). I don't drink nor smoke. But, I have this pain on my upper central rib (thought it's my breast initially but dr said it's just my joints) ...which wakes me up in the middle of the night these days.I just experienced pain on my right abdominal side last night.And I have this pain in my right hand when I woke up.It has been on and off for a month or so.

Has anyone experienced these? It must be mild, but i need to find answers.I was asked to rest in a week and then I'll get another bloodtest next Friday.

[9743km]

Have you or your Dr. looked into lupus?  I believe that lupus causes the joint pain.  Your liver enzymes don't seem to high.  But it could be the start of a mild case.  Have them do a liver biopsy.  I had an ultrasound and they told me the liver looked great, I had a biopsy and they told me there was already cirrhosis.  You need to get the liver biopsy to really give any direct details.  They are able to tell what the disease is immediately too.  They test the liver directly to see what is causing it to inflame.  That is why your liver numbers are high.  Though start with the lupus.  I don't think you need any biopsy's for that.
Just my thoughts, and I certainly am no expert!  Good Luck....

[Sarad]

Kim: Glad to here you had a great holiday and that the weather war nice and hot. What a bummer to come back to snow, at least you had 10 days of nice weather is better than none. Glad to hear that you are feeling good.
Erin: Hope your husband is doing better. When men are sick or hurt it's like the entire world had caved in, when we are sick we just keep going.
b1b2: The only way to know if you have a liver disease is by having a biopsy I also had ultra sound and they said my liver was fine and my labs were over 1200 for the liver enzymes. So I would agree to check about the lupus first and then if the liver enzymes are high get a biopsy. If you do have AIH try to catch try to early.
Well everyone take good care and be strong.

[Jody515]

Hi Everyone,
Sorry to have not been out here in awhile.  My brother is very ill, don't look for this to go on much longer, in & out of hospital continually, about to cost me my mind.  In addition my youngest daughter went up to NJ this wkend with her husband to see his sister perform in a recital for school of arts up there & they were involved in auto accident while there, okay but for hurting in backs & necks.
Just wanted to say that prior to being diagnosed with AIH I did have upper body joint pain very badly & it took at least a yr of medication for the pains to eventually leave. Of course my aunt had the Lupus & she was in a wheel chair sometimes when I would see her & other times not. Also wanted to say that I had blood work done for 6 months prior to the HCV showing up & the AIH never did show up in blood.  It did take a biopsy to determine what was going on & the AIH was the culpret doing the damage, not the HCV. My enzymes were very very high, just can't remember anymore what they were.  I do know though that they weened me very slowly down on the prednisone.
Erin, my youngest daug did the same thing when she had a broken leg, got up & around on it too soon, even with a pin in it & had to go bk & have same surgery again only with a larger pin this time.
Kim, I know you are sorry your vacation is over, weather is getting better though isn't it? Rainy here now for several wks but temps are coming up & trees are starting to sprout their buds.
Sara, hope all is going well your way, do you have a family?  I only ask out of curiosity you don't need to respond if you don't want to.
To all I haven't addressed personally I did try to address in some of my responses. Hope this finds all in good spirits & feeling good. Have a great one & hugs to you all.  Jo

[9743km]

Is there a possibility of a liver transplant for your brother?  Does he have AIH, I think you mentioned it before, but it has slipped my mind?  How old is he?  This has got to be very hard for you and the family.  Not sure if he is married and has kids, but I can imagine what this does to a family.  My girlfriend lost her husband 9 years ago to a liver disease.  Not AIH, but another type of liver disease.  She had 4 young kids, and it was tough on the entire family.  Its been 9 years and she just started dating a year ago, and now is engaged.  Its a very scary and exciting time for her...Anyway, I will keep you and your family in our Prayers.  Be strong.  And I hope this email finds you in good spirits as well...
Take Care...Kim

[ConcernedMom1987]

Jody,

I know from personal experience how very hard it is to watch someone you love suffer and to feel helpless.  Hopefully, you, your brother and your family can find some sort of peace while going through this.  

Like Kim says, try to stay strong.  Prayer helps.

[Sarad]

Jody: Sorry to hear that your brothers condition isn't getting better. We are all thinking of you and praying for his well being.
I am alomost 39 yrs old and I have 2 boys 9 and 4.5. They are great but the last year has been difficult. Going through this disease wasn't very easy. The prednisone made me crazy very hyper and I would lose my patients very easily. Thank god things are just getting better but I know at times as hard as it was for me it was also hard for my husband and kids.
Hope everyone is feeling OK or as good as could be expected. We are all at different stages of this disease and some stages could be very difficult.
So be strong ladies and try to be as positive as possible.
Sara

[Jody515]

My brother is 55 yrs old, has two grown children & a wife of 36 yrs.  He has NASH.  He quit smoking approximately 13-14 yrs ago & immediately went from tall & slender to tall & 280 lbs.  He did nothing to conquer this problem thru those yrs.  As a result he developed fatty liver which went into NASH.  It doesn't do this for everyone & they aren't quite sure why it happens to some but not all.  He has gone thru the transplant clinic, last time being yesterday.  He was told he would die on the table because this disease ruins other organs in the body as well.  When your liver goes, a toxic fluid builds up around the abdomen, lungs heart. etc.  He has gone from being drained weekly to every 3 days now & is about 12 ltrs at a time.  Over the last month or so he has really gone down hill.  I see it in him, hear it in his voice & he can't even get to the bathroom anymore alone.  When they drain him he becomes very weak.  Yes, it is so difficult for his wife & family to watch as he has a son & his family that moved in with them to help.  It is also very hard for the siblings to watch.  We watched suffering from both parents & this was not expected since he was just diagnosed last April. When I spoke with him yesterday I asked him to let go & let God & to enjoy life that was left to the fullest.
None of us knows how we are to depart this world for sure.  I am doing okay, & at the same time of this I putting down cigarettes & that certainly is hard in & of itself but I do recognize that it is a must.  I do not intend though to permit myself to gain that weight, no way. I have been since Sat smoke free, with patches & going to try hypnosis at hospital also. (not an easy addiction to put down believe me)
Thanks for your thoughts & prayers, much appreciated just as I pray for you & yours.  Jo

[Jody515]

Sara thank you for your thoughts & prayers.
I know it has to have been hard for you & your family with all you have been thru. I have 2 granddaughters that I watch for about 2 hrs, 3x a wk, one is 2 & the other is 5.  I love them to death but even today, my patience runs thin also, I can't imagine this full time.  Maybe it is the prednisone that does this, I am not sure, but I do get the shakes sometimes & haven't really been able to figure out what does it.
Blessings sent to all of you out there & it would be wonderful if someday they could figure out exactly what causes this & come up with a real cure instead of remission.
Rainy here again today, in the 50's & looks like it will be that way thru all next wk.  Yuk, Yuk! I am ready for sun & warmth as I am sure most of you are.  Jo

[9743km]

Oh Jody, my heart is definitely breaking for your family.  How hard this must be for you. Sounds like you were a great support to him on the phone, and the rest is in fact in God's hands...Again, you will continue to be in our Hearts and Prayers!
Congratulations on the no smoking since saturday.  I hear it is one of the hardest habits to quit.  Don't be to hard on yourself and take your time.  You know you can do it just take one day at a time!!!  You have almost made it a week.....YAHOO!!!!

I went to my liver Dr. today and he told me that he wants to do another biopsy.  He told me with how much he has had to zig zag my meds and such do to me being allergic to the imuran and showing more allergic reactions to the high doses of 6 MP he wants to make sure everything w/the liver is okay.  He said if the hepatitis is still active on the liver after the year of treatment he may switch me to another drug.  Prednisone with something else.  He said the other drug is more expensive, has only been on the market for about 5 years, but it has shown real good possibilities.  So until he sees if the disease is still active on the liver he doesn't want to switch me.  So I am somewhat disappointed, but I guess I can only be glad he is looking out for me.  My numbers are about 20-30 pts above normal.  
Let me ask all of you a question:  When you were on the prednisone and being lowered on the sterroid would your Dr's raise the imuran at the same time?  Or did they wait until the prednisone had the disease almost to "normal" and then start increasing the imuran?  I told him that I would like him to decrease the 6 MP until the numbers get more to normal.  I feel that that is part of my problem. My body can't take both potent drugs at the same time.  I told my nurse this today after he left, and she said she would talk to him about it.  You guys let me know how your Dr. did it????  I am 10 mg of prednisone and 100 mg of 6 MP.

Anyway, I am with you guys as far as my patience with the kids.  My kids drive me crazy a lot of the time, and I think its the drugs.  I've got to move off of them.....Biopsy scheduled for April 17th...

Talk to everyone soon....50 and sunny here today, but I think rain is coming next week for like 4 days straight!   Uuuuggghhhh!!!

[Jody515]

Hi, am alittle confused on what the meds are that are called 6MP? I have never heard of that before. And that is due Kim to you being allergic to Imuran?
I can't remember exactly if they started me on the prednisone & the imuran all together or not, but if not, it wasn't long before the bought in the imuran.  I say that because I remember one morning prior to getting used to taking the two, I took a real high dose of the one I wasn't supposed to take such a high dose of & had to call the doctor at home at 7am because it scared me so bad.  I probably took the double dose of imuran but really just not sure what I did.
My brother is back in hospital & they have been in two days straight talking to family of hospice & are coming bk in this afternoon to try to convince family this is for the best.  He does want to pass at home though so I am not sure what is going to happen.
I wanted to ask all, do you take a med for gerd caused by the prednisone? I do & the gerd hasn't bothered me for yrs but all of a sudden out of the blue, the gerd is bothering me every day this wk.  Am wondering if it has something to do with the patches I am wearing for stopping smoking or if am need of a new medicine.  Any out there still experiencing heart burn/gerd?
Well, we received an inch & half of rain last nite but this wkend to be in mid to high 60's with sun so that will be wonderful.
Guess I need to shower & get to hospital, have a good day & blessings sent to you all. Jody

[9743km]

Hi Jody...I used to have real bad heart burn.  The told me to use prilosec.  I did for about a week, then it went away.  I haven't had a problem since....
And yes, the 6 MP is a drug similar to imuran.  Because I did become allergic to the imuran they moved me to 6 MP.  I seem to be doing well w/it, but I just don't agree w/my Dr. on the dose I am on.  He has me on 10 mg prednisone and 100 mg 6 MP.  I want him to reduce the 6 MP until I am off the prednisone.  He doesn't seem to agree though.  I have labs in another month and he'll monitor at that point...
Well, I am so sorry about your brother and how hard this must be on you and your family.  His wife and kids must be beside themselves.  I will certainly be Praying for you and your family.  Its all we've got, right?  You take care and many blessings to you today.  
By the way we have rain today too, but its supposed to be in the 60's and sunny here all weekend.  Cheers to the sun!!!!  

[Jody515]

Yes, Kim, I had heart burn real bad also in the beginning even with the prilosec.  I would wake up in the middle of the night thinking I was having a heart attack screaming & my husband would have to run & get the tums & I would take about 5 of them & then be okay.  The doctors then put me on 2 a day but in the last yr put me bk down to 1 & it has been okay.  I have just noticed though in the past wk that the heartburn is coming again at nite so I started myself on 2 pills a day again & next month when I see doctor want to find out what is going on.  Hope I am not hurting myself with all the anxiety from my brother & not smoking both.
I really don't understand why your doctor hasn't reduced your intake of the 6MP since I personally have been on 50 mg of the imuran for yrs.  Your disease that active?  I guess we will know more next month after your next blood work?  I had to have 2 biopsys several yrs apart.
Have to wait to see if I am watching g-kids this afternoon or not prior to going to hospital. My daughter works nites & her husband works days so I have them for a couple hrs in between their jobs but she is in pain from that accident last wkend so not sure what is going on.
Sun has got to be cheering this wkend can't take much more of this dreary weather. YUK! Hope everyone's day is great & that your weekend is better.  Jody

[Sarad]

Jody: I am so sorry about your brother it must be so hard for you all. My prayers are with you.
I started imuran on the same day I started prednisone and I am on the same dosage even though I am off prednisone. My DR. will hopefully lower imuran dosage soon.
Kim: I think it is great that you are scheduled for a biopsy This is the only way to really know how the liver is. Good Luck.
About the heart burn stuff I also get it once in a while pop in a tums and I am fine again.
Well take care everyone I am at work and must get back to things.

[9743km]

Sara and Jody/Thanks for the info....That is what I am questioning w/my Dr.  I don't understand why the 6 MP keeps rising.  He and I are not seeing eye to eye and its causing a bit of "friction".   Some of my lowest numbers were on the lowest doses of imuran and 6 MP.  We shall see.  I also don't think he reduces the prednisone quick enough.  I was 12.5 mg for 6 mos.  Now I've been on 10 mg since Feb.  We'll see how that goes.  I am having another blood test this week, not by his request, but by mine and I'll see how it looks.  I have reduced myself to the 50 mg of 6 MP and I told him if the numbers keep coming down, then he better figure something else out.  Very frustrating to not be doing what your Dr. tells you to do because you don't agree.  He knows I don't agree as well.  So I'm sure he is very frustrated w/me at this point too....But nobody is going to look out for me better then me, right?

Sara...How was your weekend away?  I hope you and your husband had a great time...

Jody...I hope your daughter is feeling well soon....I hope your brother is okay too...And I'm positive the sun will help all of your days be brighter!  I know it is working for me.  It has been a great weekend....60 and sunny...

[Jody515]

Hi Guys,
just have a min for right now but wanted to say that I believe I started the Imuran & prednisone at same time also but not positive.
Kim, is your AIH very active? Do you have any idea as to how much damage was done? I don't but intend to find out next month on the 31st.
My daughter has missed some work due to her neck & back hurting but other then that is okay.
Sara, I didn't get the heart burn last nite so we will see how it goes between now & May 31st.
I was shopping today & got a call from the hospital that my brother's blood pressure was falling fast so I had to make a quick exit to hospital but they had it back up on rise to 83 over 54 when I left.  He is awake somewhat ( have him on oxycotin & going to switch to morphine) He still wants to come home, he was told by UC that Louisville (about 100 mi south from here) does sometimes do transplants on heavier people.  I certainly don't want to take his hopes away from him but I know he is too ill for surgery. I just don't see it as being long now, trying to spend as much time as possible with him while I can so I need to get bk over to hospital.
Yes, sun is out & it is close to 70, love it but can't really enjoy it right now.  Hope all has had a great wkend & talk soon. Jody

[rockmelon44]

Hello Ladies its been so long since I wrote you all to know how you are doing?  Seems to be mostly good news on here which is great! :-) I am so glad we are all fighthing this and doing so well.  I am doing great as well I am still off the pred. and I am only taking 25 mg of 6-Mp which has been great.  got a cold a couple week ago took along to get over but I am pulling through.  The only one strange symptom I have been having is no period.  I am over a month late and I started a bit last night and then it stopped.  I already checked to make sure its not pregnancy I figure it must be my pills.. anyone else on 6-Mp have issue with their cycles??.

Take care ladies!! :-)

[9743km]

Hi everyone...
Jody, I hope you and your family are doing well...I'm sure the call from the hospital about your brother was a scary one to receive...Were they able to stabalize him so he could make it home?  Sounds like that is where he wants to be....

Rockmelon....I am on the  6 MP but have no problems with the period.  I did have a problem with my periods when my numbers were high.  I spoke to my Liver nurse about it and she said when your numbers are high and just settling you may notice an issue with periods.  So make sure your numbers are stabalized.  When is the last time you had a blood test?  If you had your numbers tested awhile ago, and the numbers were good then its probably  just your body stabalizing.  And that seems like it'd be okay..

Well all, I made a terrible mistake for the last week or maybe two.  I was taking 5 mg of prednisone instead of 10 where I'm supposed to be at.  I was taking the pills from the wrong bottle.  I had a couple 5's left over from when I was on 15 mg.  So I kept them for when I get down to 5 mg.  Well I noticed today the bottle was low, so I looked at it cuz I was going to get it refilled.  Noticed it said 5 mg and my 10 mg bottle was shoved in the back....I panicked.  Big time!!!  So I called my liver nurse right away and she told me not to panic but just to bump it back up to 10 mg asap and 100 mg of 6 mp and I should be okay in about a week or so.  I went and had a blood test and my numbers doubled from a week ago.  I had a blook test last week and it was at 63 and 99.  This week 125 and 200.  Can you believe that???? Completely freaking...My nurse said not to worry w/the sterroid going back to 10 and the 6 mp going up, I should be fine in a week or so.  What a dunce...The progression is to go from 10 mg of prednisone to 7.5 until you stabalize not 5 mg and my 6 mp was cut in 1/2 too.  So I cut everything in 1/2 and my body definitely paid the price....

Back on the right track, Kim

[Jody515]

I guess you have all figured out what happened from this end. My brother passed away last Friday at noon and it wasn't a pleasant way to go is all I can say.  Actually it was terrible. Spent much time at hospital with him, funeral is tomorrow.  I hope all are well, will get back with you soon when i can collect my thoughts.  Love, Jo

[Sarad]

Jody: I am so sorry about your brother. I know it is very difficult to lose some one you love. We lost my mother to cancer almost 5 years ago and as hard as it was and still is I know that as soon as she passes away she stopped suffering and had no more pain.
At the end I think that this is very important no more suffering.
Take care and my condolences to you and your family.
Kim: Hope you are doing better now boy you must be careful with the dosage you are taking at least you noticed it on time before any damage was done.
Well I am trying to get over a very bad cold and cough already for about 5 days it is just making me crazy and very tired. I have some cough syrup but doctor is very careful with what kind of medication and how much. I have tons of work so I can't even take a day off. I will be off however Saturday till Monday included so I am looking forward to that.
I also had problems with my period but mine lasted about 2 weeks or I would get it twice in one month. Thank god it is all ok now.
My next blood tests are on April 28th so we will see how everything is going.
Well take care ladies and be strong.
Jody I think I may speak for everyone on this forum: Our thoughts and prayers are with you and your family.
Sara

[9743km]

Jody...Yes, Sara is correct in her speaking for all of us...Our thoughts and Prayers are definitely with you and your family.  You take care of yourself and your family.  I am so sorry for your loss.  From your words it sounds like it was tough to see him go the way that he did.  But again as Sara mentioned there is absolutely no more suffering...You  take care and we'll anxiously await hearing from you.  Be strong and know we are thinking of you!!

Sara....A cold huh?  They seem to stick around longer then they should, and they definitely do ware you out...
I'm assuming things are still going great with your Dad?  It was sad to read your words about your mother's passing to cancer.  That must of been very hard for you and your family as well...I hope you are still feeling great.  I am feeling much, much better.  I can tell my numbers are getting back to where they belong.  This disease really puts you in tune w/your body.  Whether we like it or not.
I go for blood tests on the 23rd, so all I can do is Pray that I am where I need to be.  I was supposed to have a liver biopsy tomorrow but they cancelled it until they see how things are looking next week.  Now that I'm back on my dose, etc....
The sun has finally been smiling down on MI.  It has been a fabolous week or two, and it still is....Nice to know the Lord hasn't forgotten us....Ha ha....
Enjoy your day and I hope you feel better soon.  Don't work to hard!!!!

[Sarad]

Kim: wish you lots of luck for your next labs.
Thaks for your thoughful words about my mom. Yes it was hard and still is hard we were very close.
Well I am still not feeling very good I have this terrible cough that is just not going away
it is really draining me out even the medication isn't helping.
I just hope that it doesn'y have to do with AIH but I guess I will find out when I have my next labs 28/4/08. We are having a great time with my dad and he is helping me so much.
Jody... Hope you and your family are doing OK. We will be here for you when you are ready to join us again.
Well everyone take care and have a great weekend.
Sara

[9743km]

Hi Sara....We had a fabolous weekend.  I hope you guys did as well.  I'll be thinking of you this week and hoping you are feeling better.  Is the cold any better?
Labs on Wednesday I'll give everyone the update.....

Jody...Sara is right.  We are here when you are ready....

Have a Great Monday everyone!

Kim

[Sarad]

Well I still have my cough but you wouldn't believe what happened I broke my middle finger on my right hand on Sunday. I have to have it in a splint till 11/5/08. It so hard to do things and it is quite painfull. I broke it helping the kids climd down a wall in our back yard.
Kim what about your lab results?
Talk to you all later I am on the way to the hair dressers to color my hair.

[9743km]

Oh my goodness Sara?  What in the world?  You have to have it in a splint until November?  I can't believe it.  You must of really did some damage.  I imagine that must be super painful.  It must make typing very hard too...I imagine your extra happy now that your dad is there...You have another set of hands!!!!

Thanks for thinking of me and my numbers.  Well they came down quite a bit...If you recall they were at 125 and 235.  They came down to 69 and 125.  Haven't heard from my nurse yet, but I have a feeling they'll have me go another 2 weeks and see if it gets closer to normal.  I am still kicking myself that I made that dumb mistake.  What in the world?  That number 69 is the number that won't seem to go any lower.  So I am going to talk to my nurse about it and if it doesn't reduce by the next lab I am insisting they change my 6 MP to that new drug my Dr. was talking about.  We shall see....

You are getting labs on Monday right?  Hopefully all will be well.  Make sure to let us know.  And don't even discuss hair.  I so need to get my roots done.  I needed to go a week ago, and I still haven't called my hair salon.  I think I'll do that today.  You gave me the motivation to do it...I love it when I get it colored, but its the time to get it done.  Well you know, you are a working women w/kids too.  Just never enough time in the day.

[Sarad]

Glad to see that your numbers are getting better, hopefully in 2 weeks they will be even better and you can go down with th pred.
Not November May 11th In Israel the dates are written like in Europe May 11 is 11/5.
it is still hard with the splint on my fingers. It is so hard to do alot of things.
Anyways take care
Sara

[Sarad]

Wow, it's unbelievable just 1 year ago exactly today I had my biopsy and was diagnosed
with AIH. What a year.I felt so bad last year at this time and I am feeling so good now (except for this broken finger I have).
I wish everyone lots of luck and that everyone will be off steroids soon.
Take care
Sara

[9743km]

What a nice email Sara...Thanks for the luck w/the sterroids.  I need to get off.  
I hope your finger is better soon and I am so happy for you that you are off sterroids and moving in the right direction!!!!  What a change a year can bring, huh????

I am a little worried about Jody.  Haven't heard from her in awhile.  I hope she is okay...
Jody, if you read this please let us know how you are doing...

[iloveigs]

Hi everyone...

Some crazy things going on here lately, huh? I hope everyone is doing OK today.

I go for labs on Friday. My last labs, a month ago Friday were my first while off the Prednisone. I had been off for 2 weeks and we rechecked. My ALT was 41 and AST 48. Both of these were up about 10 pts from when I was ON steroids. My GI said to continue w/ no steriods and 25mg of Imuran until this Friday and we'll see what's going on. I'm a bit nervous that they will have gone up more. But, if they do, I'm hoping (and will request) that we just up the Imuran to 50mg and see if that helps. I'm determined to stay off the nasty stuff!

Thanks for checking in with me via email earlier, Kim. :)

Erin

[9743km]

So good to hear from you Erin...I was worried that we hadn't heard from you in so long.  I know you were going through some home renevations and that your husband had some injuries, but I wanted to just make sure...I'm sure if your numbers have gone up they'll just increase the imuran.  25 mg is a low dose.  So 50 mg I'm sure would be no problem.  Yeah, once your off the pred it probably feels great!  Who would want to go back on?
Well glad to hear you are doing well, let us know how your labs go??

Sara, weren't you getting labs as well.  Hear anything???

[Jody515]

Hi Everyone,
Just wanted to let you all know I am okay & that I appreciate all your thoughts & concerns. It was very difficult to let go of my brother, but watching his suffering there that last week was so bad, I was glad at least that he wasn't suffering any longer. I have never watched anyone pass away in the manner that he did & hope & pray that I never witness anything like that again.  It was like he just didn't want to give up even there at the end.
My son-in-law of 21 years who is more like a son had a brother who was only 45 yrs old passed away this Sunday & now we are dealing with that.
I am happy to hear all are doing pretty well but am sorry that Sara's finger isn't doing so well.  I can't imagine what damage you did to it Sara.
Erin, are you saying the steroids kept your numbers higher? And Kim, when is your biopsy scheduled?
And Concerned Mom, how are you & yours doing?
I see my doctor at then end of May & I am compiling a list of questions I need answers to.  Such as what type of AIH do I have? Why is everyone else getting off the prednisone & I am not, how much damage did I suffer prior to treatment, lastly but not leastly am I to avoid sunlight.
Kim, I remember very well, the days of being a working mother and it is not an easy task. I had to take early retirement due to my illnesses but I don't miss that one bit. I worked for a long time in a very tough field, working my way to the top & when I arrived there, I kinda wished I had stayed more middle management because what I was doing was hard.
Again, thanks for all your concern & prayers & mine are with you all.  Jody

[Sarad]

Well good news about my labs my numbers are great.
Erin: I have been on 75 mg of imuran from the beginning and only now that I have been of the steroids for a while is mt liver doctor thinking of lowering it to 50 mg.
I hope your numbers don't go up higher I think it will be a good idea to higher the imuran. Good luck on Friday.
By the way glad to here from you it's been a while. How are the renovations going and how is your husbands leg?
Kim: How are you doing? Will there be another biopsy scheduled?
Jody: Sorry to here about another death in the family hope your doing OK be strong. I thing it's even harder when we have our own health problems. So take care.
Well every one have a great weekend.
Sara

[9743km]

Erin, We are all so happy to hear that you are ok.  Boy, I can't believe that you have yet another death in the family....When it rains it sometimes pours, but you will get through it.  The death of your brother really sounds horrible.  Your writings about him fighting not to die even at the bitter end was extremely sad...I keep thinking about that and how hard that must of been for each of you to see...It sounds like he was surrounded w/family and loved ones...

Well I am doing well, but I seem to have a bit of a cold...Couple ladies at my office had colds and now I seem to be getting it.  Doesn't seem to be to bad right now so I'm trying to drink a ton of water!!!  No biopsy scheduled right now.  I talked to my nurse today and they may check the level of the 6 MP in my body again, and if its still elevated then they may just go and switch to another med.  We shall see...The new drug they would switch me too my Dr. said they only have about 5 years of data for.  So it is a newer drug.  Where as imuran and 6 MP have been around for 20-30  years.  So that is the only reason he was holding out...My nurse said she was going to talk to my Dr. this afternoon and she'd call me back by 4-5:00...So I'll let all of you know later....

Talk to everyone soon, Kim

[iloveigs]

Well, I got my labs done on the 1st. My ALT was 39, up from 31 and my AST was 53, up from 48. My nurse talked it over with the GI doc and he said that we will still just monitor for another month without upping the Imuran. I'm glad not to have any med changes, but I just have a feeling that my LFT's will continue to creep back up if they dont increase the Imuran.....like I said before, just as long as they don't say I need to go back on Prednisone!

I have a followup with my Rheumatologist on Monday. For those that don't remember, I was diagnosed with both AIH and Lupus. My hands and wrists have been a bit stiff and sore since getting off the steriod. My rheumy said it should go away a couple weeks after being off it, but it really hasn't. I certainly dont have the type of pain/swelling that I did when I was just being diagnosed, but I can tell for sure that things aren't quite right. But, I'm going to tell my rheumy that I don't want to add any more meds. I would rather live with the stiffness and occasional soreness than add something that might mess with my LFT's. So, we'll see what he has to say.

My home renovations are about 99% finished. We had our front and back doors & screen doors replaced with new energy efficient steel doors. Then we had 2 old and horrible rock walls replaced with nice retaining wall block that's kind of a red/black color mixture. Then we had a 12 x 19 deck built above the retaining walls and the guys cut us a new door in my living room to walk out onto the deck. We're just waiting for him to finish up a couple small things and then it will be done. I will definitely be glad to have the project finished! It's been a bit stressful to say the least.

My husband is doing fine now. His broken ankle healed correctly and he doesn't seem to have any more problems with it.

Next weekend is our city Spring Clean Up day for the area I live in. They bring 2 big garbage trucks to the school parking lot and for about 5 hours you can bring just about anything down to get rid of. I can't wait for the day as I have a bunch of stuff to get rid of that's just too big to put out for the regular trash pickup. I'm sure I will be dead tired next Saturday, but boy will it be worth it! There's a lot of junk that the contractors didn't throw away for us from the renovation, so I will be glad to see it go.

Well, Sara, I hope your finger is getting better and Jody sorry to hear about your loss.

Hope everyone has a safe and happy weekend. :)

Erin

[9743km]

Hello All,
I hope for all of you mother's out there you had a fabolous Mother's Day!  It was a great weekend here in MI so just being able to be outside was great!

Erin, Was your spring clean up weekend this weekend?  How did it go?  It must of felt wonderful to get rid of all the stuff in the yard.  Your new home renovations sound great.  So exciting to get new stuff isn't it???

Sara, how are things going w/you? how is the finger?  How is your dad?  Still there?

Jody, hope you enjoyed your Mother's Day?  How is your family doing?  Though we've never met you have been on my mind a lot.  Sounds like you have really gone through a lot in the last couple of months...By the way, how is your friend that had a heart attack while in FL?  Was he able to return home?

Hope everyone has a great day!!!!!!!  Kim

[Jody515]

Hi Everyone!
How are you all doing??? Good I hope.  We have colds here but other then that, we are doing okay. Didn't have a great Mother's Day, the kids wanted to come over & cook lasagna & salad for us, but didn't want them to catch our colds and the weather this wkend wasn't very conducive, rainy & cooler. Yuk!
My list for the doctor keeps growing when I go on the 27th.  First on the list of course is the prednisone & how come I have to stay on it when everyone else gets to come off. I also want to know about sunlight & if due to the disease or the meds I am to avoid it.  It is rather hard to just stay out of it.  Have any of you been told to avoid the sun? The first doctor I saw in 2001 told me to cover up & stay totally out of it?? I also want to know if AIH or the form I have is systemic lupus.  Have any of you been told that? And does this mean our immune systems are just totally screwed up or what?
That's not all of the questions, I think I have 7 total so far to ask.
Sara, how is the weather over where you are & how is it most of the time. Sorry to sound so dumb but do you get the weather changes your way or not?
Kim, what have you been into lately?  We are planning to take another few days away soon, just not sure where yet. What type of reaction did you have to the Imuran & pred that you can't take it or did it just not work?
Erin, have you got your strength back yet from the big cleanup? We worked in our yard for several days this past wk, & yes, we could do some throwing of stuff away from the garage & storage shed but takes more strength then we feel right now.
Hope this finds all well, all is okay here & speak with you all soon.  Hugs to all, Jo

[Sarad]

Hi everyone,
Well I am now down to 50 mg of imuran. I went to see my dr. today and he told me that he is very happy with my results. I am going almost by the book and he wishes he has more patients like me.
Well today is my birthay so I told mt liver Dr. that the news he is giving me is the best birthday present anyone can give me. My health. With out our health ladies we are nothing. I think this is something we all realized going through this disease.
My next blood tests are in only 2 months.
Erin great to get rid of things I did the same in April. We save so much junk.
Jody hope your colds are gone. Have you decided where you are going for a short holiday it will be great for you to get away.
The weather here is starting to get very nice I just got back from the beach a while ago.
The weather in Israel is mostly warm but the winters can get a bit cold.
Kim how are you doing what about prednisone will you be goung down soon.
Well I got the splint taken off my finger it is still swollen and sore but I will go to phsyotherapy for a while. My dad is still with us so he is a great help with everything.
He will leave us mid June.
So ladies take care and have a great weekend.
Sara

[iloveigs]

Happy Birthday Sara!

I hope you had a wonderful day. :)

I was able to get rid of a lot of stuff for the spring clean up: a lot of old furniture the dogs had pretty much destroyed and all the leftover junk from the remodeling, plus a lot of old wood/picnic table that had been on the side of the yard for years. I would like to have seen more go, but at least we accomplished what we did. Always next year!

I've been having some problems lately. First of all I'm worried about my liver enzymes slowly creepy back up. I go for my next labs around June 2nd. Plus, I've still been having some joint pain in my fingers and wrists and the other day it was in my jaw.

Then, 2 nights ago I woke up in the middle of the night feeling like I was super hungry with a stomach ache from being so hungry. I didn't think much of it and went and took a drink of milk. Well, when I woke up Thurs morning, the left side of my neck was painfully stiff as if I had really slept on it wrong and, I was feeling extra 'belchy'. I didn't think much of that either.

Then, last night when I laid down I started getting this horrible gas-chest pain that I used to experience back in Sept when this all started. I writhed in agony all night. I don't know how I got any sleep it was so uncomfortable/almost painful. It pretty much feels like a giant sphere in the middle of your chest trying to push its way out, at least, that's about the best I can describe it.

So all day today I've been super belchy, almost in a painful way, but I am feeling a tad bit better tonight. I started thinking that maybe it's linked with my Lupus. I googled a few things and read somewhere that some things that can happen to people with systemic Lupus are neck and shoulder pain in the muscles, excessive gas and belching, and chest pain as if you're having a heart attack.

So, I'm pretty much convinced that the Lupus is causing this and it makes me really mad. I don't know how to make it stop. I had been on an acid reflux med the whole time I was on the prednisone and I didn't have the chest pain. I quit taking the reflux med about a month ago b/c I didn't really think it was helping me and I've felt fine in that respect for the last month. Today I decided to start taking it again, but it's the kind where you have to take it and wait 30 min before you can eat...a real pain.

I just saw my rheumy about 2 wks ago and am not due to go back for another 8 wks. If I'm still having this issue all weekend, I'm going to call Mon morning and beg to be seen at the end of the day. I don't know that there's really much he could do for me. Maybe prescribe a different acid reflux med...I dunno. It's really scaring me though b/c it always makes me think it's my heart but I know it's not.

Ok, well, I guess I'm done venting now. I hope that everyone is doing the best they can and that you have a wonderful weekend.

Erin

[9743km]

Erin...I'm sure a lot of those feelings you were having would be scary.  Of course anything to do w/our heart we just purely panic. Who wouldn't?  Sounds like you've got a little bit of experience w/it though.  You know it is not your heart.  This lupus thing sounds like a real pain in the butt.  I know someone else that has lupus and she sounds a lot like you.  Does real well, then all the sudden it comes back...I'm w/you if you feel the lupus pains continuing call your Dr. Monday AM.  No reason to suffer through that and not be able to sleep....
So glad to hear you had much success w/the spring cleaning...My sister n law and I and my mother n law are having a garage sale at my in laws house the 3rd week of June.  So excited for that...I feel like I am not a junk collector, but everytime I turn around there is more junk in my basement.  I started going through and sorting it all out for the garage sale!  Woo Hoo!!!!

Sara, you do sound like such a text book case for AIH.  I am over a year at this and my numbers are still not perfect.  Much, much better but still not there.  Man, I could only wish it went as well as yours...Glad yoru finger is on the mend as well...

I just had to go get tested for another toxicity test last week.  My dr. wants to make sure the 100 mg of 6mp I am on is not toxifying my body.  He is thinking that it may be doing the same thing that the imuran was...Could it be that my 2nd med is not working either?  I am growing so tired of this.  In a big way.  I go for labs again on Wed.  He said he'll look at everything together and decide if he needs to put me on something other then the 6 mp.  He said most people who cannot handle imuran go to 6 mp.  And typically 98% of people are great.  Then there are the 2% freaks like me...Anyway, he said there are some other drugs to try but they are just not as known as imuran and 6 MP.  I'll let you guys know.  Last month my numbers were still holding in the high 60's.  They just don't seem to go below that.  That is why he is thinking the 6 MP is stopping the progress.  Anyway, same old story different day....

Hope everyone has a fabolous week...Kim

[9743km]

Woops!  Hit the button to soon...HOPE YOU HAD A GREAT B-DAY SARA!!!

[Sarad]

Thanks for the Birthday wish ladies I had a nice day
First the good news from my Dr. and then I spent the rest of the day with my family at the beach.
Erin how are you feeling hope things are getting better. It does seem like you have a lot of experience with this (unfortunatley). Did you get to see your Dr. Keep us posted.
Great that you were able to get rid of all that junk.
Kim: Sorry to hear that your numbers are not going down I hope your Dr. find a solution and quick. It sure must be a big pain in the but having to maybe find another medication.
There must be some reason this is always happening. Take goos care and keep me posted.
A yard sale sound great hope you get rid of lots of things.
Well ladies take care and lets keep each other posted.
Sara

[iloveigs]

So I was complaining about the gas/chest pain recently. Well, it 'seems' that the Protonix (a proton pump inhibitor) is actually taking the edge off of it. I'm still having a little of the chest pain, but it's definitely nothing like the first go round.

I was also having a slight increase in joint pain, especially in my hands. Well, I called my rheumy and he said I should go ahead and do my labs early (I was scheduled for June 2nd). So, I did them on May 22nd. I did my LFT's and then my rheumy ordered ANA, sed rate, crp, and the double stranded DNA antibody for lupus.

Well, my sed rate and crp appear to be normal, however, my LFTs are creeping back up. My ALT was 59 (up from 39) and my AST was 67 (up from 53). And this change was in only 3 wks.

So, my GI nurse called back and said that we're going to bump the Imuran from 25mg to 50mg. So I've been on 50mg for about 3 days now. I pray that this will stop the increase. I'm terrified to go back on Pred.

I can't really tell yet if I'm having an improvement with joint pain, I hope the med increase will put a damper on that too.

So, enough of that. My mother is coming to stay with us this Fri-Sun. She's going to buy me some lilac bushes and maybe some perennials. I'm really excited about it. I LLLLOOOVVEEE the smell of lilacs!

Ok, so I hope everyone is doing OK and has had a good weekend.

Erin

[iloveigs]

Forgot to say that I don't have the antibody labs back yet but will let you know as soon as I do!

[9743km]

Erin, I'm sure the imuran will kick in, and do the job.  25 mg was still a very low dose.  50 mg and still low as well.  Like you said, least it is not the prednisone.

Well my story is not going as smoothely as all.  Still on 10 mg of prednisone and 50 mg of 6 MP.  My Liver nurse called yesterday and said we better do the liver biopsy.  I was scheduled for one in April, but my Dr. cancelled it.  Now I am getting one on June 5th.  They told me they'd have the results by the following tuesday.  They said that'll let them know if they need to switch my meds or what needs to happen next.  Growing so tired of it.  It just really seems to get old after awhile.  15 months in to this long battle...But I guess we just move through, right?

I'll let everyone know something the minute I find something out....

Well I hope everyone else is doing well....Kim

Erin and Jody....Let us know how the numbers turned out!

[rockmelon44]

Hello ladies

Its been awhile since i have been online i see a lot has happened to everyone.  Jody I am sorry to hear about your brother I lost my Dad from Cancer and watching it take him and make him change from the man we knew was extremely difficult.

Well I was doing really well only taking 25 mg of  6-mp, seeing a doctor about the screwed up periods and was down to monthly bloodwork. Lost 15 pounds too.  Then came the bad news.  My levels are up alittle bit so I had to go back on preds. 20 mg a day, i hate taking it soo much makes me cranky and puffy.  Its only been about  7 months in this long battle and I have had it better than most but I guess I just keep hoping it wont flare up.  Well i'm trying to keep postive my liver dr only want me on pres. for 1 month . i hope thats all it ends up being always seems like time lines change.

Take care of yourselves

Nancy

[Sarad]

Kim: good luck with your biopsy I think it's great that your having one, then you will really know what's happening. Keep me posted.
Erin: Hope your feeling better. Hope the 50mg of immuran will help.
Nancy: Sorry to hear you are back on prednisone. Hopefully it will be a month and that's it. Good luck.
Well I should be taking blood tests by the end of the month. So far I am feeling OK. Hope nothing will flare up and my results will be OK.
Well  take care ladies and be strong.
Sara

[9743km]

I had my biopsy yesterday.  It went well...I should have my results in a week...I'll keep you posted..Kim

[Jody515]

Hi Everyone,
Been a while since I have been out here, seems we spend so much time doing yard work & with the temps & humidity being so high it is not easy.
Erin, when you say you have systemic lupus, exactly what does that mean? I didn't get all of my questions answered two wks ago at doctor's because I saw his assistant & won't get to see him until next Feb if all blood comes back good, which of course I know it will.  I also had an ultrasound last wk so I guess they are waiting to get bk all info before calling me. They did put me down to 2.5 prednisone but I have to go for another blood test on June 27th to make sure I am doing okay on that low a dose & can never come off the prednisone & says that 50 mg of Imuran is as low as I can go.
Sarad, thank you for the info on the weather over there & I hope you are doing well. Sorry I missed a birthday wish to you.
Erin, what type of arthritis do you have? Is it rhuematoid & is that also a part of systemic lupus?  I know the normal type of Lupus is a kind of rejection of heart & kidneys.
Kim, how are your feeling & have you received back any info yet from your biopsy? I think the news should be good.
Nancy, thank you for your concern for my brother. I of course have already lost both parents, one from auto accident & one from alzheimers but just didn't ever think I would lose a younger sibling.
One of my daughters has an appt with my doctor next wk. She is pre-diabetic, something wrong with vascular system & has fatty liver.  She isn't fat, they say fatty liver is not autoimmune related, but it did go on & develope into NASH for my brother & he never drank so I am not so sure they are totally sure of all that.
Did you all watch Extreme Home Makeover last nite & see that all 4 of those children had that same rare disease that they were saying wasn't inherited? I cried thru the whole show almost.
Okay, hope this finds all well with everyone, take care & talk soon.  Jody

[iloveigs]

Jody, here's a little info from the Lupus Foundation website:

"There are four types of lupus: discoid, systemic, drug-induced and neonatal lupus."

"Systemic lupus can affect almost any organ or organ system of the body. For some people, only the skin and joints will be involved. In others, the joints, lungs, kidneys, blood, or other organs and/or tissues may be affected."

For me, it seems to effect my upper GI system. The very first syptom (symptom) I had was horrible chest pain accompanied by excessive belching. This turned into a really weird 'strained' feeling in my throat that travelled to my palette. Then my throat was sore for like 45 days. Then I went on Prednisone after a liver biopsy that also confirmed AIH, so all those symptoms went away. I also had joint pain...don't know which disease caused it b/c both can.

Now that I've been off Prednisone for a couple months, all the symptoms came back. My GI did a couple of blood draws and with the last one a week ago, my LFTs were 60 & 61. My rheumy also ordered another ANA and anti double stranded DNA (a lupus marker) and a C3 & C4. Turns out that my ANA (which was 1:640 at diagnosis) was about 1:120 and the DNA (which was 1:40 at diagnosis) was now 1:160. My rheumy nurse said it was no wonder why I was feeling the way I was. Also, my C3 was about 5 pts too low. This is a protein complement in the blood that signifies inflammation and is typically low w/ Lupus patients.

SOOOOOOO, per my rheumy, my GI finally raised my Imuran to 100mg (from 50mg). I've been on 100 for about 4 days now. I'm still having the typical joint pain and stiffness, BUT my throat isn't sore anymore, so maybe it's going to help. I can deal w/ the joint pain, it's just that horrible chest **** that is unbearable.

Kim, let us know the SECOND you get your results!!!

Jody, let keep us updated on your daughter's appt.

Hope everyone is doing OK this week.

Erin

[Jody515]

So Erin, since I didn't get to see my dr but his asst, does that mean that all of us with AIH have what is called systemic lupus?  I know prior to my diagnoisis, I had upper body arthritis so bad I couldn't even put on a blouse, jacket, coat or anything without help.  After about one yr of treatment with the imuran & pred, that part left me. I am confused. Does your intestional issue mean you have Crohns also?Jody

[iloveigs]

AIH and Lupus are totally different things....Just b/c you have AIH doesn't mean you have Lupus. However, it's not uncommon that if a person has one autoimmune disease, they will have multiple diseases, which is my case. I have AIH, Lupus and Colitis.

Lupus can cause joint pain. AIH can also cause joint pain. The diagnosis for Lupus includes a typical list of 12 or so symptoms that a person must have at least 4 of to be diagnosed. For me, I had 2 postive antibodies, joint pain, and a small rash on my shoulder. Lupus is, I guess, difficult to diagnose. I guess I just got 'lucky' that I had all these things going on at once and it was easy to distinguish b/c of my blood tests.

I hope this helps explain it a little better! :)

Erin

[Jody515]

Erin,
Thank you for the info. When I was first diagnosed in 2002 with AIH the gastro doc called it Lupoid Hepatitis. Then when my cousin passed away in Jan of this yr from an autoimmune pulmonary disease I googled it in & the Wipideka said that her disease along with AIH & a couple others fell under systemic lupus & that is what got me to puzzling. My cousin's mother did pass (my mother's sister) from lupus in the 70's at a pretty young age, early 40's because I guess not as much was known bk then as to now.
You guys have stayed on top of what all this means more then I have I can tell you that I am concerned though now that you speak of colitis because my youngest daug has that in addition to Graves disease. When she had a colonostomy done they did tell her that something was found that was autoimmune related but she can't remember what it was as she said it was a long word. Gosh, what have I passed on to my children?
Anyway, hope this finds all well today & thanks again Erin for your update.  Jody

[9743km]

Well ladies I received some pretty amazing news!  My Liver Nurse called me yesterday and said all Good News but the Dr wants to see you as soon as possible.  She said that my liver looks great and all evidence of the disease seems to be gone.  She said that he would discuss the entire situation with me.  So we are going to the Dr today at 9:30 AM.  I'll fill all of you in after that!  She told me to walk in with a huge smile.  You guys know this has been a battle for me for the last 15 months, so I can't wait to hear what has happened....I'll update later this afternoon!!!!!  Kim

[iloveigs]

This is awesome news! Can't wait to hear your update!

[Jody515]

Kim,
Absolutely great! You mean our livers can heal themselves? Fantastic for you! Please let us know upon your return what the dr had to say! I am so happy for you & hope all the rest are feeling good.
Erin, how are you feeling today? Aches & pain still there? I do know how that feels & it is not nice at all.
Sara & Nancy how are you ladies doing?
Later girls, & Kim let us know asap.

[9743km]

Hello Ladies,
Well I met w/my Dr.this AM.  He said that my liver looks much better then it did last year.  He said that all signs of the active disease on the liver are gone.  The problems I've been having the last couple months are due to the meds.  He said that the only problem the liver had was the problems induced by the drugs.  So I am to stop the 6 MP immediately and he is starting me on a new drug in a couple days.  He said w/in 3 weeks he'll get labs and we should be able to start weening off the prednisone...Of course much like you guys I am nervous to start the weening process...Once the prednisone is weened and if my body is still doing well he'll reduce the new drug too.I was so afraid there would be more damage to the liver since it seems like I've been at a stand still for months, but he did indeed tell me that it looks great!  Praise God!!!  I really am giving all the thanks and Praise to God.  I've really been asking for the Power of Healing and am so happy it is moving in that direction....Of course I'll keep everyone updated...

Erin, how are you feeling?  How are the joints?

Jody, when is your daughter going to your Dr?  And how is your family doing w/the death of your brother?  Are you all ok?

Sara, hope all is well....

[Jody515]

So glad to hear about your results on the liver, that is so wonderful & yes Thanks be to God.  Did the doctor tell you anything about the new drug? It will be great if you can get off the prednisone. Even though I have a pill cutter I am finding it very difficult to cut the 5mg in half  evenly since they are so small to begin with. How much of the prednisone are you taking right now?
As a family I guess we are doing okay, I took my brother's wife to the cemetary yesterday to view the new stone that finally arrived & to go have lunch. I am afraid she is compensating his loss with food but can't approach her on that right now. He was her high school & only love so she is really grieving hard.
I hope all the rest are doing good today, Erin, Nancy, & Sara & anyone I might have left out it was not intentional.
My daughter's appt is next wk on the 19th so keep her in your prayers please.  Later, Jody

[9743km]

Hi there...I am currently taking 10 mg of prednisone.  The new drug is called cellcept.  Basically, all the literature my Dr. gave me and everything I see on line its the same thing as imuran and 6 MP.  Though it is made by a completely different pharmacutical company and it is only 5 years on the market.  It is quite a bit more expensive as well...Insurance covers most of it, but I noticed it is more then 1/2 of what I paid for imuran and 6 mp.
You know Erin from what I see on line many people w/lupus are on this drug.  Not sure if it'd be something that would help you...

Good luck w/your daughters appt.  We'll be following up.

[Sarad]

Kim: I am so galad to hear your great new. I had a feeling everything would be OK.
Having a biopsy was the best thing to do. I have been off pred since the end of January it does take a bit for the body to adjust but you will see that you will be just fine once your off. I'm sure this new medication will be fine.
Erin: How are you feeling hope most of your pain is gone. Maybe you should check out the new drug Kim wrote about.
Jody: Please let us know how your daughter is doing.
When my doctor first told me that I have AIH and he said that it is in the family gene but runs mostly through women I was very happy that I have 2 boys.
Well I am still feeling good. Unfortunatly my father left us back for Canada a few days ago. It was very hard for the kids, he's a great grandfather and its pretty hard for me he really helped me out a lot. I guess that's life. God willing he will be back next year.
Well ladies take good care and be strong.
Sara

[9743km]

Sara- sorry to hear your dad left.  I can imagine how hard that must of been saying Good Bye.....Sounds like a regular old Mr. Mom, and he sounded like he enjoyed every minute of it...You are right though God Willing he will be back.  Do you guys ever travel to Canada where he is?  I would assume the summer would be best, huh?

Trust me I know what you are saying about the family gene thing Sara.  I have 4 girls.  I spoke to there pediatrician and beginning at the age of 18 they will be tested with blood work every year.  So that way, if there liver numbers are up we will pretty much know what it is...None of this searching around for months/years on some people and not knowing what it is...

You are right, the liver biopsy is really the only tool to tell you exactly what is going on...And yes, Thank God it was good...So many people seem to be getting sick these days, it just tears me up, and makes me realize life is not so bad, not bad at all....

Well I hope everyone has a HAPPY FATHER'S DAY!!!  I will not be celebrating it w/my dad today becuase he is flying to Brazil so my hubby will get all the attention today!!!

Keep Smiling friends....Kim

[Jody515]

Hi All,
Just a min to let you know my daughter is okay, her levels are coming bk down & Dr says she has time needs to get her blood glucose under control so she is going a diet to get her sugar levels down & go bk in 3 months. Says she is still young enough to get this under control.
Sara, sorry your Dad lives so far away, I know that has to be hard for you. I remember being away from my parents when I was younger & I became so home sick for them.
Kim, how are you faring on the 10 mg of prednisone?  Will it get reduced again soon? I have to go at the end of this wk for more blood work due to me being cut down to 2.5 mg to see if it is working okay. Does the 10 mg hurt you in any way? I am glad also your liver looks better, wish mine could heal itself.
My blood sugar & chloride showed a little high (first time I ever received a copy of all & don't really understand it all) so I guess I need to cut bk on sugar intake but the chloride thing is I guess coming from the meds or the liver.  Ultra sound results sound yucky but at least they stayed the same so I shouldn't complain.
Erin, how is your pain? I hope & pray you are feeling much better these days & your meds are starting to help you some.
Guys take care & we'll talk soon, prayers go with you all.

[christine46]

i have recently been weened down to 5mg of presidione about 6 weeks ago i dont have no energy my body is very tired my hand are killin me is this normal can you help please i have ah for one year now i am 46 year old female christine rafis

[Jody515]

Christine,
The only thing I can help you with is that either the disease itself or the meds do this to us. Have you spoken with your dr regarding this?  I never had pain in my hands, but I did in upper body but after about a yr or so on treatment the pain finally went away.  Do you know how far progressed your illness is?
Have you tried exercise to help with the pain? I know when the energy level dips down it is hard to do these things but we can all of us be here to help support you as we have all encountered these issues from time to time.
I still get tired easily as I am sure most of us do, but what to do about it, I just try to keep going & not sit down & let it take over me.
please stay in touch with us & let us all know how you are doing.  Jody

[9743km]

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

[2Young4This]

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...

[9743km]

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

[Jody515]

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

[Tenderheart2]

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  

[9743km]

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...  

[Tenderheart2]

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

[Jody515]

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

[iloveigs]

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

[9743km]

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!

[Tenderheart2]

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!!  :)  

[9743km]

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....

[Sarad]

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

[Tenderheart2]

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

[Jody515]

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

[2Young4This]

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.

[iloveigs]

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

[iloveigs]

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?

[9743km]

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

[2Young4This]

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.  

[Tenderheart2]

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

[Sarad]

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

[Jody515]

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

[wendyfrey30]

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???