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Posted 7/22/2015 8:17 AM (GMT 0)
I was just diagnosed with AIH in May 2015 and was started on Predisone (down to 10mg per day) and Imuran 75mg per day.  My ALT and AST were >1300, T.bili 13.5 at time of hospitalization and are thankfully now in normal range.  My question is does everyone feel absolutely exhausted all the time? Is it from the meds or the AIH.  My doc (Gastroenterologist) didn't do a biopsy because he said all my labs were a perfect match for AIH.  He is not very talkative and it's hard to pin him down to get answers from him so I am sooooo happy to have found this forum.  All I could find were forums from >5 years ago.  I feel better just being able to "talk" to someone with the same diagnosis.  I have seen that some people go into remission, how do you know you're in remission--come off meds and see what happens??  Doc said I will have to be on meds for the rest of my life and I sincerely hope this exhaustion gets better.  I have 5 Granddaughters and work in a Laboratory (12 hr shifts) so I need my energy back. I take a shower and have to sit for a few minutes before I can even get dressed.  I had been feeling really bad for about 3 months before a co-worker asked why I was so yellow.  I had noticed changes in color of urine but thought dehydration.  Never expected this.  Sorry to be rambling, but like I said I'm excited to find someone else with AIH that knows first-hand what it's like.  I have taken steroids before for a ruptured disc so I'm used to the hot flashes but the moon face and acne are new.  How long do they last?  Thanks for any information that you can share with me about what to expect.   :-)
Posted 7/22/2015 11:20 AM (GMT 0)
Hi there

My own experience was that it took a good few months to feel better. My logic was that the initial illness had drained my reserves and it took awhile for them to refill. Add in getting used to the meds and it's no wonder you feel so tired.

The moon face and acne tend to disappear at lower doses of steroid.

I find the term remission confusing as some people mean normal readings on meds whilst others mean normal readings off meds. In my experience very few people can maintain remission off meds - but a few can.

I was diagnosed 16 years ago now and am well on an immunosuppressant called mycophenolate mofetil. Having said that some people with AIH do have ongoing fatigue. No one can explain why some people get this and others don't. But think positive and hopefully in a short while things will improve.

Ann
Posted 7/22/2015 4:13 PM (GMT 0)
Barb,

Welcome to the HW Hepatitis forum. We are a group of patients and caregivers/loved ones of those with liver diseases.

WE have several active members, one a co-moderator, who post about AIH. You have heard from AIHer in the UK and I'm sure others will be along.

I am the partner of a patient who has had quite the ride: Alcoholic Liver Disease, Hepatitis C, Heptocellular Carcinoma, and every side effect there is that led to a transplant in 2011. He is doing well now, but, like you, on a lifetime regimen of meds that have their own issues. BUT, he manages, rests when he is tired, and glad they found the diagnoses, treated him, and now he is getting on with his life.

He is sober 5+ years, post TP and cancer 4+ years, and Hep C free 1+ year (he was treated with new drugs in 2014 when his new liver had significant fibrosis already...so he is far from "perfect.").

One thing you can do is use the SEARCH bar above the posts and put in AIH (or write it out) and look at recent posts just in your category, or put in one of the AIH posters "AIHer" for example and read about their journey over time.

I will tell you from observation that fatigue is the biggest complaint for folks with liver diseases of all kinds.

With the AIH flares, especially the first big one, folks get really sick, really fast. Their AST/ALT scores are sky high and some need Transplantation. But most, once diagnoses and on a med regimen that works for them, have normal lives and don't every get into the really bad states we see with Hep C or Alcoholic Liver disease.

We have had posters who are young, marry, have kids and careers....they get on with it! I hope the same for you.

It sounds like your doc is on top of this. If you every need more help with this, look for someone that treats lots of AIH folks, often at a major medical center/unversity hospital. That is where the real specialists are.

Let us hear from you over your journey,

Hugs,
Mama Lama
Posted 7/22/2015 9:19 PM (GMT 0)
Barb,

Welcome and nice to e-meet you (I'm helping a friend get that out there :-) ). Anywho, I have to say I'm one of the lucky ones and don't have significant fatigue. I chalk up fatigue for me to being a bad sleeper and the fact that I blow off sleep more than I should for funsies, hitting the gym, reading, etc... I'm also lucky in that I responded very well to the meds right off the bat.
I agree with Ann...you may just need to adjust. It's still very new to you. Did you have any spell of hyper on the pred? I always worry if people are weaning too quickly. It took me a few months to get to 10mg. Although, once on the 10, I was so much happier. The hyperactivity was better, I was able to sleep, the acne, moon face and hump on my back started fading. You'll love when you get to 5mg! Just be sure the 5mg to zero wean is super slow. Mine took 2 months.
I was the same as you ...dark urine must just be dehydration coupled with this cold I have until poof! My whole body turned yellow, then I knew it was my liver. It took two weeks to diagnose me. I'm surprised you didn't have a biopsy but maybe they are moving away from it. I thought they'd want to know what type of cellular damage they were dealing with. Sounds like you're responding to the meds though since your levels are normal. Most discuss being stable over remission. I'm on the meds for life plan too. It's not so bad. A couple little pills a day. I'll take that over worrying about a flare...although flares can happen on meds so you'll need to be on a regular blood routine. I go once every 6 months now and only see my hepatologist once a year.

Ask any questions you have! I'm not on soooooo often, I'm bad like that but Carol shoots me an email :-) Feel free to email me too. There's a tab under my name.
Posted 7/28/2015 5:11 AM (GMT 0)
Thanks for the replies.  I feel lucky to "only" have the AIH after reading MamaLama's reply.  That would be awful to have to go through all the extras.  DGinSD I did have that restless, hyperactivity period that you described.  I couldn't sleep and was just fidgety.  I didn't have the energy to do anything with the fidget though. I was on 80 mg prednisone in the hospital for a week and then I was discharged on May 22nd on 40 mg prednisone and I started tapering down the dosage on June 30th.  I went to 30mg and each week dropped 10 more til I was down to 5mg.  That's where I'm at now and Doc says I'll stay on that for life unless something changes.  My family Doc says that's too fast but to do what the Gastro says.  I've never had a chronic illness of any type so I want to take a few days of meds and be done with it.  Lol   I don't like this having to take it forever and still not be "cured".  I hope the fatigue does improve like it does for some because I hate this feeling.  I don't have another appt til the end of September so I can't really find out anything from the doc.  I would like to be seeing him quicker than that since I am new to this (have only had 1 office visit) and have questions but that's when they told me to come back.  I am taking multivitamins and extra B vitamins to see if that helps any.  again, thanks for the replies and welcoming word it nice to know I'm not alone in this.

Barbara

Posted 7/28/2015 6:07 PM (GMT 0)
hello everyone, I am Fariba, I was diagnosed with AIH in December. I could not tolerate Pred, and azothioprene. After 6 months with my blood test not showing improvement I am back onto 10mg Budesonide and Celcept. My prospect God knows. I have blisters, I am diabetic and on insulin, cant sleep and really suffering but life is beautiful. I am so grateful you are all here though wish all of you did not have to be. Please keep chatting. God bless you all
Posted 7/29/2015 12:16 AM (GMT 0)
Oh fariba...you have (unfortunately) found us...and we will walk through this with you.

Next time you post in start a new TOPIC and then keep your "news" in one thread unless something Amazine or Difficult happens that needs its own TOPIC.

I'll let our AIHers know we have a newbie. It is easier when there are others with this same situation.

I hope they get your meds under control soon. How are your labs? Even though you are having sides, are your liver numbers getting better? I sure hope so.

Hugs,
Mama Lama
Posted 7/31/2015 12:31 PM (GMT 0)
Hi! New to this site. I have been going through testing for over a year now. Ultrasounds, Doppler, Mri, numerous blood tests( usually 10 viles at a time and liver biopsy. Waiting for a second opinion on my liver biopsy. Diagnosed with AIH and F3 liver Fibrosis. Feeling tired a lot. Was given diagnosis on July 15, 2015 and have been started on Entocort 9mg per day ( no side effects as of yet). Hepatologist is waiting for second opinion and possibility of azathioprine and ursodiol added. I am overwhelmed. Any in site would be greatly appreciated.
Posted 7/31/2015 5:54 PM (GMT 0)
Sorry to hear you are struggling, but so glad you found us. Welcome to the Hep forum! We do have members with AIH, as well as one of our Mods. I am sure they will pop in soon to lend support.

I am a caregiver for my husband as he waits a liver transplant. His liver disease was due to Hep C, which he treated and cured. The damage was already too great to avoid the need for transplant. Again, you are welcome here. Big Hugs
Posted 7/31/2015 6:07 PM (GMT 0)
Thank you...Themiz
Posted 8/7/2015 1:08 AM (GMT 0)
Hi everyone I hope you are all having a great evening. I'm new to this site and hope to get some life experiences from you all. I'm am 60 years old this past March. I had my thyroid removed when I was 24 years old and have been on medication since then. I have autoimmune thyroiditis also know as Hashimoto's Disease. Last year I was diagnosed with autoimmune hepatitis and it's been a nightmare for me. I'm now on 6mg of buedesonide and 50 mg of Imuran . I've gain 25 lbs in the last year and have been miserable. I'm exhausted all the time. Its been a year and I was hoping things would get better but not the case. I hate being negative but some days I just can't help it. I feel like My family doesn't really understand what this disease does to you.
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